Generations · 2017-08-16 · Leader Printing Disclaimer The National Ataxia Foundation does not...

GenerationsThe Official Publication of the National Ataxia Foundation

Volume 37, Number 3Fall 2009

Preparing for aVisitwithYourNeurologistBy Sue Hagen, National Ataxia Foundation Patient Services Director

Receiving a diagnosis of ataxia can make youfeel as if you are losing control of your life. Oneway to feel more in control is to take an activerole in your health care. Becoming informed isan important way to achieve that goal. Choosinga physician to supervise your overall health careis essential. It is worth the time and effort it takesfor you and your doctor to build a relationshipof openness, caring and mutual respect. Such arelationship can be a powerful factor in your ownphysical and emotional well-being.

This article is to assist you in having produc-tive appointments with your physician so thatyou can feel and function better with ataxia.

Your role during your medical appointment isto provide information about your health, healthhistory, medications, and symptoms honestlyand concisely. The following recommendationswere made by neurologists who see patients withataxia. Using these suggestions can make yourappointment with the neurologist a more bene-ficial experience.

Prior to the AppointmentBring the name and address of the doctor who

you want to receive a copy of the medical reportfollowing your visit.

Bring a record of all the tests, with the results,including the actual images of the MRIs (of thebrain and spine) and CTs and the genetic testingreport. This prevents the necessity and expenseof having tests repeated.

Bring a complete list of all the medicationswith the dosages as well as any vitamins orsupplements that you are currently taking. Inaddition bring a list of medications, vitamins orsupplements that you have tried and are nolonger taking. People are understandably reluc-tant to talk about this, but if you are using illicitdrugs, it is important to tell your doctor.

Bring an accurate and complete familymedical history with specific walking or othercoordination problems that family membersmay have had or currently have. Prior to theappointment, ask family members about medicalconditions that exist in your biological family.Include grandparents, parents, aunts, uncles, sib-lings, cousins. Ataxia is often a hereditary diseaseand this information is helpful for the physician.

If the neurologist who you will be seeing isnot familiar with ataxia, consider purchasingthe bookletEvaluation and Management of Ataxic

Continued on page 3

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Generations Fall 2009

Generations Staff:Julie Braun .....................................Financial DirectorSue Hagen ...........................Patient Services DirectorMike Parent....................................Executive DirectorLori Shogren....................Special Projects CoordinatorLiz Werner.................................Outreach Coordinator

Design, Production and Printing..............Leader Printing

DisclaimerThe National Ataxia Foundation does not endorse products, services, or manufacturers. Those that arementioned inGenerations are included only for your information. The NAF assumes no liability whatsoever forthe use or contents of any product or service mentioned in the newsletter.

Please direct correspondence to:National Ataxia Foundation2600 Fernbrook Lane, Suite 119Minneapolis, MN 55447-4752

Phone: (763) 553-0020FAX: (763) 553-0167Internet: www.ataxia.orgE-mail: [email protected]

Generations is published by the National Ataxia Foundation, Inc., Minneapolis, MN.Copyright 2009 by the National Ataxia Foundation, Inc. All rights reserved.

We ask that other publications contact us for permission to reprint any article from Generations.

Annual Membership Meeting

“Winds of Progress” – 2010 NAFAnnual Membership Meeting Overview..... 15-21Chicago Services & Resources ................ 22-23

Research

NAF Funded Ataxia Research Reports ........ 5 -13Support the Research Drive ........................... 8Development of Methods to Determinethe Pharmacodynamic Effect of HDACInhibitors on Frataxin Expression .................. 29Using RNA Interference toSilence the SCA3 Disease Gene .................. 31Advancing Rare Diseases Research .............. 47

Articles

CFC Number .................................................. 4GoodSearch .................................................. 8Flu Shot Recommendations ......................... 10Twin Cities Support Group LeaderCompetes in Triathlon .................................. 13F.I.T.T. Column: Inclusive Fitness Coalition Callfor Members and Advocates for Change!........ 14“Commit to Your Health” DVDNow Available .............................................. 21“Neurology Now” Available ........................... 21Patient Registries: Vital for Ataxia Research ... 21

Articles (cont.)

From the Desk of the Executive Director ........ 25NAF Provides Input into Action Planfor Those with Physical Disabilities ............... 27Matching Gifts ............................................. 27New Database at NAF ................................. 28NAF Board Member Named to GeorgiaCouncil on Developmental Disabilities .......... 29Town Hall Meeting with NIH Director ............. 32How Did You Celebrate IAAD? ...................... 33Tissue Donation .......................................... 33Call for Award Nominations .......................... 37Macy’s Shopping Day for NAF ....................... 37Share Your Story ......................................... 43

Membership Topics

NAF Merchandise ........................................ 30Chapter and Support Group News ................ 34NAF Chapters, Support Groupsand Ambassadors Listings .......................... 38Calendar of Events ...................................... 44Memorials and In Your Honor ....................... 46

Personal Stories & Poems

A Vision of Courage ....................................... 4My Life-Changing Event ............................... 26I Have Ataxia ............................................... 28

Table of Contents

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Disorders: An Overview for Physicians by SusanL. Perlman, MD from the National AtaxiaFoundation. “This book is intended to informand guide family practice and other physicianswho may be caring for patients with ataxic symp-toms or who have been diagnosed with ataxia.”Available at www.ataxia.org.

During the AppointmentBe prepared to answer the following questions:

How and when did the ataxia symptoms comeon? How have the symptoms changed? Whatactivities are you finding difficult to do? Whatmakes the symptoms better? What makes thesymptoms worse? Be as specific as possible.

Select the top three symptoms or problemsthat are the most severe that you want discussedduring the appointment. Your neurologist mayask specific questions about those symptoms.Stay focused, listening closely and carefully sothat you can answer his/her questions accurately.

Describe other medical conditions that youmay have, and any allergies or adverse reactionsthat you have had to medications.

Be sure you understand what the doctor hasdiscussed with you. Ask for clarification; do notleave the doctor’s office confused. If necessary,bring a relative or friend who can write theinformation down.

Following the AppointmentMake appointments immediately for any

follow-up tests, therapy or other orders. In somecases, doctor’s orders can expire within a certaintime frame, so it is important to make thesefollow-up appointments immediately.

Make sure that your primary care physicianreceives the report of your neurologist visit.

Fill medication prescriptions immediately andbegin taking them as prescribed, reporting anytroublesome side effects immediately.

Call the doctor’s office if you have forgotten

or are confused about anything that was dis-cussed or prescribed. Do not wait until the nextvisit.

Learn as much as you can about your disease.Find and use only reputable and accurate sourcesfor information. The following websites havereliable information on ataxia:

• The National Ataxia Foundation: www.ataxia.org

• National Organization for Rare Diseases:www.rarediseases.org

• The Movement Disorder Society: www.movementdisorders.org

• National Institute of Neurological Disordersand Stroke: www.ninds.nih.gov

Consider joining an ataxia support groupwhich can offer companionship and informationfor people coping with either the hereditary orsporadic types of ataxia and the challenges thataccompany those disorders. The National AtaxiaFoundation has a listing of known ataxia supportgroups at www.ataxia.org.

Recommended ReadingAfterShock: What to Do When the Doctor

Gives You – or Someone You Love – a DevastatingDiagnosis by Jessie Gruman, PhD. “When facedwith a devastating diagnosis people must quicklyunderstand the prognosis and often must choosefrom several treatment options – all while still inshock. Social psychologist Jessie Gruman offers apractical, 10-stage approach to making clear-headed, informed decisions...” Jessie Gruman’swebsite: www.aftershockbook.com.Living With Ataxia: An Information and

Resource Guide by Martha A. Nance, MD forthe National Ataxia Foundation. “The messageof this book is that living a good life is an entirelyreasonable aspiration even with ataxia. The bookis packed with practical information for every-day living, and it points the way to many usefulresources. Available at www.ataxia.org.

Fall 2009 Generations

Preparing for a Visit with Your NeurologistContinued from page 1

Continued on page 4


A Vision of Courage

DefinitionsMRI – Magnetic resonance imaging is a

noninvasive medical test that helps physiciansdiagnose and treat medical conditions. MRimaging uses a powerful magnetic field, radiofrequency pulses and a computer to produce de-tailed pictures of organs, soft tissues, bone andvirtually all other internal body structures. MRIdoes not use ionizing radiation (x-rays).CT Scan – Computerized tomography, or just

CT, is an X-ray technique that produces imagesof your body that visualize internal structures incross section rather than the overlapping imagestypically produced by conventional X-ray exams.

Genetic testing is completed through a bloodtest to look for alterations in a person’s genesor changes in the level of key proteins codedfor by specific genes. Abnormal results onthese tests could mean that someone has aninherited disorder. Most genetic testing forspinocerebellar ataxia and Friedreich’s ataxiais done through Athena Diagnostics: www.athenadiagnostics.com.

Preparing for a Visit with Your NeurologistContinued from page 3


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A Vision of CourageBy Charles Scimone

I’m writing this article in tribute to YvetteScimone. I was her husband and caregiver.Before her illness, my wife was a vibrant woman.She was an excellent “nonna,” wife, and mother,but most of all, my best friend. Her charm andpersonality had no end. Her smile would light upa room. She was small in stature, but she had aheart as big as her. She was diagnosed with ataxiaabout 2000. It was a complete shock not know-ing what it was. The doctor said there was nocure. That alone was devastating.

I went online to get some information onataxia. I received some literature from theNational Ataxia Foundation. After reading somearticles I got a better understanding about that

debilitating illness. My wife began losing herbalance and falling. She started using a walkerand eventually used a wheelchair. She also losther speech. Despite what she was going through,she never lost her sense of humor or her spiritto get better. That alone gave me the strength togo on, so I could take care of her. I bought anaccessible van so I could take her out to differentplaces. She loved the beach. I didn’t want her tobe homebound.

Her biggest joy was being with her family andseeing her first grandson born in 2006. Westarted to go to the support group in Boston.That’s where I heard about Dr. Jeremy Schmah-mann. We went to see him where he diagnosedher with MSA (multiple system atrophy). Icannot thank him enough for the care andcompassion he gave her. I went to my firstAnnual Meeting in Las Vegas. I was veryimpressed at the information that I got from thedifferent breakout sessions.

My wife lost her fight in November, 2007. Istill attend the support group meetings to possi-bly offer my help and experience as a caregiver.One last word: friends never say goodbye.

CFC NumberThe National Ataxia Foundation’s Com-

bined Federal Campaign (CFC) number is10752.

This program provides a convenient wayto donate to the Foundation and providesgreat benefit to those with ataxia. Pleasegive as generously as you can.

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Friedreich’s Ataxia (FRDA) is a progressiveneurodegenerative disease due to the deficiencyof a small protein named “frataxin.” Frataxin isimportant for several cellular functions, mainlywithin some cellular organelles called “mito-chondria” and especially in pathways that arededicated to keep under control the cellular“oxidative stress.” This is why cells with frataxindeficiency exhibit increased sensitivity to theoxidative stress that is the stress that particularlyreactive molecules cause to various cellularfunctions.

Unfortunately, there is yet no effective treat-ment available to fight this disease and thetherapeutic approaches mainly addressed to slowdown the progression of the symptoms. Morerecently, lot of interest has been focused to thepossibility to develop drugs able to increase theintracellular frataxin amount.

Recently, in the so-called “post-genomic”era, high throughput methods produced a hugeamount of data on gene expression after a variety


The final reports of the National Ataxia Foun-dation funded ataxia research are published inthis issue of Generations. These important proj-ects move science forward to understand ataxiaand seek cures and treatments. NAF is gratefulfor the hours spent in labs and clinics by theseworld-leading ataxia investigators.

But there is another side to this team effort andthat is the appreciation that researchers have forthe National Ataxia Foundation’s commitmentto fund their research. Funding is made possiblebecause of donations made by individualmembers, family fundraisers, memorial gifts andother financial support. Below are some of thecomments that were received from researchers:

“Thanks again for the support.”

“I am very grateful to your organization for thesupport to our research.”“Thanks for your collaboration.”“We gratefully acknowledge NAF support to our

research.”“I enclose a copy of the paper published thanks to

the grant received.”“We express our gratitude for the support received

from the NAF.”“It’s my collaborators and me, and the patients,

who thank you for making this research possible byproviding the funding!”

As you read the lay summaries of these researchprojects, you can be assured that the Foundationhas funded the most promising efforts to findanswers to treating and eventually curing ataxia.

Continued on page 6

NAF FundedAtaxiaResearch Final Reports

The Possible Role of PPAR-GammaAgonists as Therapeutic Agent in the FRDABy Fabio Acquaviva, MD, PhD and Sergio Cocozza, MDUniversity of Naples, Naples, Italy

The following is a research summary of a grant funded by NAF for fiscal year 2008.



of different stimuli. These data are very crude,not conclusive and difficult to screen, but theycould be very useful in hypothesis generation. Byusing bio-informatics tools, we screened these

data searching for hintsabout molecules able toinf luence the frataxinproduction. We foundsuggestions indicatingthat “rosiglitazone,” adrug mainly used forthe treatment of thediabetes, was apparentlyable to stimulate thefrataxin production.Rosiglitazone acts as

PPAR-g agonists, meaning that it is able to stim-ulate PPAR-g. PPAR-g works as key regulatorof the mitochondrial biogenesis. Another im-portant function of PPAR-g is the regulation ofthe oxidative stress status of the cell. Moreover,molecules able to stimulate the PPARs functions

have been reported to have some neuroprotec-tive effects in other neurodegenerative diseases.

Thus we decided to investigate the effects of aPPAR-g agonist (called APAF) on the frataxinproduction. We studied both the protein and thefrataxin mRNA in cells from FRDA patientsskin and from healthy donors. We observed anapproximate two-fold increase in the amount ofthe frataxin in both patients and healthy controlsafter treatment with PPAR-g agonist.

These results potentially have important con-sequences in the treatment of the FRDA becauseit is well known that the unaffected carriers ofthe mutation have about the 50% of the normalfrataxin amount. Hence, the possibility toincrease the frataxin production at least to thelevels of the unaffected carriers can be of greatimpact on the progression of the disease.

PPAR-g agonists are commercially availabledrugs, widely used in human therapy, andpotentially ready to be used for clinical trial inFRDA patients. Today, it is likely that a possibletherapeutic approach to the FRDA it mightconsist in a cocktail of different drugs includingPPAR-g agonists.

Research Final ReportsContinued from page 5

Dr. Sergio Cocozza

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The neurodegenerative disease Friedreich’sataxia (FRDA) results from a reduction infrataxin levels, a small protein localized in one ofthe cellular organelles - the mitochondrion. Thefunction of frataxin is not fully understood;researchers think that it plays a key role in theformation of iron-sulfur clusters. These inor-ganic clusters are incorporated into many essen-tial proteins in the cell – the iron-sulfur proteins.

When the level of frataxin is low these importantproteins are not assembled and ultimately ironaccumulates leading to a variety of symptoms.Understanding the role of frataxin in this processshould help to elucidate how FRDA develops.

The particular 3D structure of frataxin deter-mines how it functions and how it interacts withthe other proteins, which cooperate with frataxinin the formation of the iron-sulfur clusters. �

Frataxin Folding, Chaperone Role andInteractions with Fe-S Biosynthesis Proteins:Contributions to Understand Friedreich’s AtaxiaBy Cláudio M.Gomes, PhDInstituto Tecnologia Química e Biológica, Universidade Nova de Lisboa, Oeiras, Portugal



The cell nucleus is highly organized andcontains distinct domains, territories and bodies.Many of these structures participate in theefficient production and processing of RNA.Disruptions in this process will impede the f lowof information from DNA to RNA to proteinand lead to cell death. Several neurodegenerativedisorders, such as Huntington’s disease, spin-ocerebellar ataxia-type 1 and Machado-Josephdisease (MJD), are characterized by mutantproteins that generate large nuclear inclusionsin neuronal cells. While these inclusions couldbe pathogenic, beneficial or incidental, it isclear that various nuclear domains differentiallyassociate with specific types of inclusions. Inparticular, one nuclear domain known as theCajal body has been shown to associate withinclusions in MJD patient cells. The mutatedprotein in MJD is ataxin-3. Since the Cajal

body plays a role inmaking the machineryneeded to properlyprocess RNA, it issuspected that Cajalbody function may beimpaired in MJD. Pre-liminary data supportthis suspicion. Supportfrom the NationalAtaxia Foundation hasallowed us to explore ifCajal body activity is altered in neuronal-like celllines that can express normal and mutant formsof ataxin-3. We have found that mutant ataxin-3 expression impairs the ability of the cell toefficiently process certain RNAs. These findings


A change in a single amino acid (the protein’sbuilding blocks), occurring as a result of muta-tions, may affect both the protein structure andits function.

In our research, we have studied how aminoacid changes in frataxin affect the protein itself(i.e. its structure and folding) and how it interactswith other proteins. The selected mutations wereknown to affect several cellular features such asiron sensitivity, the activity of proteins that neediron-sulfur clusters, and cell viability. Some ofthese very same mutations are also found inFRDA patients. We have used biochemistryand biophysics to interpret the effect of thesemutations.

The data gathered with NAF support has

allowed us to identifythe effect of a particularmutation (in a givenregion of the protein) inthe stability and rigidityof frataxin’s structure,on its iron-bindingproperties, and on theinteractions with theother proteins involvedin iron-sulfur clusterformation. These stud-ies may give extremely relevant insights on thefunction of frataxin and hence on the patholog-ical process involved in FRDA.

Continued on page 8

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Disrupted Pre-mRNA Splicingin Machado-Joseph DiseaseBy Michael Hebert, PhDThe University of Mississippi Medical Center, Jackson, MS


Dr.Cláudio M.Gomes

Dr. Michael Hebert



therefore justify a more thorough understandingof the mechanisms by which neuronal cells die

in certain neurodegenerative disorders, withparticular emphasis on deficiencies in splicing.By acquiring such knowledge, it is hopedthat targets for therapeutic intervention will beidentified.


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Spinocerebellar ataxia type 1 (SCA1) is an in-herited disease that causes progressive instabilityof gait or ataxia. This disease is caused by an ex-

pansion of glutamines(glutamine is an aminoacid) in the disease caus-ing protein, ataxin-1.

A major shortcomingin our understanding ofSCA1 has been the lackof characterization ofpathologic changes inPurkinje cells—the celltype most aff licted inthis disease. To address

this issue we have used laser capture microscopy(LCM), a method designed to purify specific cell

populations from tissue samples from pre-symptomatic SCA1 knock-in mice (comparingthem to wild type littermates). We have success-fully established this technique in our laboratory.

Using this technique we have begun to identifygenes that show altered expression in Purkinjecells. We are currently characterizing the conse-quences of alterations of each of these individualcandidate genes in SCA1 pathogenesis using acombination of cell-based and animal experi-ments.

Finally, we should like to thank the NAF fortheir generous support. None of this work wouldhave been possible without these funds. Wehope that our work will inspire translationalapproaches to help patients suffering from ataxiaand other degenerative disorders.

Dissecting Transcriptional Misregulation inSCA1 Using Laser Capture Microscopy andTranscriptional ProfilingBy Puneet Opal, MD, PhDNorthwestern University Medical School


Dr. Puneet Opal

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The National Ataxia Foundation needsyour help!

Please support NAF’s 2009 AnnualResearch Drive – visit www.ataxia.org formore information.

GoodSearchDid you know that using GoodSearch for

Internet searches provides donations toNAF? GoodSearch recently added onlineshopping to their site, with a donation madeto the Foundation with every purchase.

Visit www.goodsearch.com today to seehow easy it is to start making a difference.

Support theResearch Drive



Mutations in the FGF14 gene have beenidentified in a family with early-onset tremor,dyskinesia, slowly progressive spinocerebellarataxia, and mental retardation. Mutations in theFGF14 gene have recently been classified as spin-ocerebellar ataxia-27 (SCA27, MIM#609307).We have been interested in SCA27 and the func-tion of FGF14 because a mouse mutant that wehave generated that lacks FGF14 has a similarphenotype to that of SCA27 patients.

We have greatly benefited from the fundingprovided by the National Ataxia Foundation. Wehave used these funds to advance our researchefforts to understand the molecular causes ofSCA27. These funds came at a time when wewere particularly short of funds for this projectand these funds permitted us to maintain keypersonnel to allow the project to go forward. Themost significant outcome of this funding is thatit facilitated our obtaining a five-year NIH grantto further pursue this research. The NIH grantstarted on April 15, 2009.

We have made significant progress on theaims of this grant. We have successfully evaluatedand validated an antibody against FGF14. Thisantibody will be critical to the long-term con-tinuation of this project. We have made progresstowards generating a mouse model for SCA27.

We have generated an engineered mouseembryonic stem cell that contains the SCA27mutation. We will use this stem cell to generatea genetically engineeredmouse that contains theSCA27 mutation.

We have also pursuedstudies using our exist-ing FGF14 knockoutmouse model. Thesestudies showed us thatcerebellar Purkinjeneurons that lack theFGF14 gene are func-tionally silent. Thismeans that the normal inhibitory output of thecerebellum, which is required to help maintainnormal muscle coordination, is no longerpresent. Thus, we have discovered a potentialcellular mechanism that can account for thephenotype that we see in Fgf14 knockout miceand in human patients with a mutation inFGF14. This work resulted in a publication inwhich we have acknowledged the NationalAtaxia Foundation.

Shakkottai, V.G., Xiao, M., Xu, L., Wong, M.,Nerbonne, J.M., Ornitz, D.M., and Yamada,K.A. (2009). FGF14 regulates the intrinsicexcitability of cerebellar Purkinje neurons.Neurobiology of Disease 33, 81-88.

We are grateful for the funding that we havereceived and appreciate the work that theNational Ataxia Foundation is doing to fosterresearch and help patients with ataxia.

Biological Tools to InvestigateSpinocerebellar Ataxia 27 (SCA27)By David M. Ornitz, MD, PhDWashington University School of Medicine, St. Louis, MO


Dr. David M.Ornitz

Continued on page 10

DeadlineThe deadline for the winter 2009-10

issue of Generations is November 6, 2009.Contact information appears inside thefront cover of this issue.

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Fragile X-associated tremor/ataxia syndrome(FXTAS) is a progressive neurodegenerativedisorder recognized in fragile X premutationcarriers that causes tremors, balance problems,

difficulty in walking,dementia and mentalchanges in males usuallyafter age of 50. Theunderlying defect forthis neurological disor-der is the gene FMR1responsible for fragileX syndrome, the mostcommon inheritedcause of mental retarda-tion. In FXTAS, unlike

fragile X syndrome, FMR1 gene produces atoxic messenger RNA because of the abnormallyhigh numbers of the repeating DNA sequences(55-200 CGG units) called premutation. Using

fruit f ly, we have previously demonstrated thatelongated noncoding CGG repeats in f ly FMR1allele as the pathogenic cause of FXTAS. Nowwe have utilized this FXTAS f ly model toidentify small molecules that can amelioraterCGG-mediated neuronal toxicity and lethality.We screened a collection of 2,000 FDA-approved, biologically active and structurallydiverse small molecules for their ability in restor-ing the viability in rCGG repeat expressing f lies.We selected 20 compounds that could reversethe lethality with several of them having the po-tential to target glutamatergic and inf lammatorypathways. We further tested selected compoundsin other established phenotypes of rCGG repeatexpressing flies. Our results demonstrate the util-ity of a Drosophila model for screening smallmolecule libraries, and suggest a potential role ofinf lammatory pathway in pathology of rCGG-mediated neurodegeneration.

Identification of Small Molecules SuppressingrCGG-Repeat-Mediated Neuronal ToxicityBy Abrar Qurashi, PhDEmory University School of Medicine, Dept of Human Genetics, Atlanta, GA


Dr. Abrar Qurashi

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Flu Shot RecommendationsIf an individual with ataxia meets any of these

criteria, he/she should be vaccinated for bothseasonal flu and H1N1 flu: children aged sixmonths up to their 19th birthday, pregnantwomen, people 50 years of age and older,people of any age with certain chronic medicalconditions (heart disease, lung disease), peoplewho live in nursing homes and other long-termcare facilities, and people who live with or carefor those at high risk for complications from flu,including health care workers, household con-tacts of persons at high risk for complicationsfrom the flu, and household contacts and outof home caregivers of children less than sixmonths of age.

If an individual with ataxia meets any of thesecriteria, he/she should NOT be vaccinated:people who have a severe allergy to chickeneggs, people who have had a severe reaction toan influenza vaccination, people who developedGuillain-Barré syndrome (GBS) within six weeksof getting an influenza vaccine in the past, chil-dren less than six months of age (influenza vac-cine is not approved for this age group), andpeople who have a moderate-to-severe illnesswith a fever (they should wait until they recoverto get vaccinated).

Please visit www.cdc.gov/flu/protect/keyfacts.htm and www.cdc.gov/h1n1flu/vaccination/acip.htm for more information.



Non-progressive congenital ataxias are a highlyheterogeneous group of neurological disordersgenerally characterized by developmental delayand low muscle tone, followed by the appearanceof ataxia. Several of these congenital ataxias arecaused by defects in the cerebellum, a region ofthe brain that controls balance and coordinationof motor functions. Some of these defectsmay be caused by an embryonic developmentaldeficit in the inward migration of a certain typeof neuron, the granule cell. Preliminary datasuggest that a cytoplasmic protein, p130Cas, isrequired for signaling cues to instruct cerebellarcells to move. We have started to explore therole of Cas proteins in neuronal migration andcerebellar development. Our main objective

was to define and characterize the function ofvertebrate Cas proteins in granule cell migrationand axon guidance.

For this purpose, we have generated severalmolecular and genetic reagents that will allow usto explore the function of Cas proteins duringcerebellar development. One of these tools is amouse carrying mutations in the gene thatencodes p130Cas, a very important Cas familymember. Our preliminary results suggest a rolefor Cas proteins in neural development. Fur-thermore, they fuel our optimism that this newlygenerated mouse mutant will serve as an animalmodel for cerebellar ataxias that result fromdevelopmental abnormalities.

P130Cas in Granule Cell Migration:Understanding the Mechanisms UnderlyingCell migration in Cerebellar DevelopmentBy Martin M. Riccomagno, PhDJohns Hopkins Univeristy, Department of Neuroscience, Baltimore, MD


Spinocerebellar ataxia 2 (SCA2) is an inheritedneurological movement disorder caused by mu-tation in the ataxin-2 gene. The disease is causedby a progressive loss of cells in the cerebellum, aregion of the brain that controls balance andmotor function. Although the disease gene wasidentified 10 years ago, the precise mechanismsleading to neuronal dysfunction and nerve celldeath have remained elusive. Several years ago,

we discovered a protein that binds to ataxin-2designated A2BP1 or fox-1. Recently, the func-tion of this protein has been unraveled pointingto a role in the processing of messenger RNA(mRNA).

Protein diversity in the different cells of ahuman body is mainly accomplished by the

SCA2 Pathogenesis: Altered Splicing Causedby Gain of Normal Ataxin-2 FunctionBy Karsten Strauss, PhDUniversity of Utah, Salt Lake City, UT



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generation of different mRNA forms (tran-scripts) of the same gene. These different tran-scripts are established by tissue-specific splicingof pre-mRNAs where the assembly of exons fora gene varies in between different cell types.A2BP1 is a protein which regulates this assem-bly in a manner that exons will be specificallyincluded or excluded in a transcript dependingon a signal in the pre-mRNA. If the function ofA2BP1 is disrupted or altered, potential mis-splicing causes generation of false transcripts in acell type. These false transcripts can result incellular stress and cell death.

A2BP1 is highly expressed in the Purkinje cellsin the cerebellum, the cells which undergodegradation in SCA2. A2BP1 might play acrucial role in tissue-specific splicing for thesecells and therefore be a key player for cell survivalduring aging. As cell stress increases in neuronsduring lifetime, additional stress by altered splic-ing can result in a rapid degeneration of agingneurons.

Our investigations were focused on the inter-action between ataxin-2 and A2BP1. Usingmicroscopic studies, we observed that ataxin-2changed the localization of the A2BP1 protein inthe cell. By adding ataxin-2 to cells expressing

A2BP1, the distribution of A2BP1 was changedfrom a normal nuclear/cytoplasmic pattern to anataxin-2 associated pattern in which A2BP1 isabsent from the nucleus. The recruitment ofA2BP1 by ataxin-2 shows a dosage-dependedeffect. Increasing cellular ataxin-2 levels lead to adecrease of nuclear A2BP1, finally resulting in anabsence of A2BP1 in the nucleus. As the splicingfunctionality of A2BP1 can only be effective inthe nucleus, where pre-mRNAs are located,the vanishing of nuclear A2BP1 might cause achange in the brain specific splicing pattern ofPurkinje cells.

To determine if ataxin-2 is able to alter splicingpatterns in A2BP1 processed mRNA transcriptswe used an artificial mini-gene construct. Weobserved that increasing levels of ataxin-2 alterthe splicing function of A2BP1 resulting inreduction of A2BP1 mediated transcripts.

Research studies have shown that the targetsequence for A2BP1 is predominantly distrib-uted among brain-specific splice variants. Thisfinding might point to an important function ofA2BP1 specifically in neurons. Our findingssuggest an unpredicted role for ataxin-2 in inter-fering with splicing regulation in the cerebellum.The resulting non-brain specific proteins mightbe a reason for an altered stress-response or in-terfere with the normal cell function by inducingcellular stress by themselves.


Mutations in the human gene SCA2, whichencodes the ataxin-2 protein, can give rise tospinocerebellar ataxia type 2 and are also associ-

ated with Parkinson’s disease. However, the nor-mal biological function of the ataxin-2 proteinis currently unknown. Our aim is to uncover �

Elucidating the Mechanism of ATX-2: TheC.elegans Ortholog of a Protein Implicatedin Human Neurodegenerative DiseaseBy Jane Wright, PhDFriedrich Miescher Institute, Basel, Switzerland


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the function of ataxin-2 in the hope that it willincrease our understanding of why things gowrong when it is mutated. To do this, we arestudying the ataxin-2 protein in the round-worm, C. elegans (homolog, ATX-2). C.elegans is commonly used as a model organismto study proteins with significance to humandisease as many of these proteins, including ATX-2, are highly conserved from worm to man.

Previous studies, including that of our own lab-oratory, have shown that ATX-2 can regulate theexpression of mRNA molecules. In order for aprotein to be expressed, the DNA of a gene isfirst transcribed into mRNA. This mRNA canthen serve as a template for the synthesis of thefinal protein and regulation of mRNA expres-sion is increasingly being found to be importantto many biological processes. Significantly, C.

elegans is the only model where we already haveexamples of specific mRNAs whose expressionis regulated by ATX-2. By studying themechanism by whichthese target mRNAsare affected by ATX-2,we hope to gaininsight into its humanhomolog ataxin-2. In-deed, it is possible thatmutations in ataxin-2may cause neuro-degeneration by inter-fering with the normalregulation of particularmRNAs. Future SCA2 therapies will likely beaimed at modulating the function of the ataxin-2 protein; therefore a detailed understanding ofthis function will be critical.

Dr. Jane Wright

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TwinCities SupportGroupLeaderCompetes inTriathlon

Lenore Healy Schultz, ataxia support groupleader from Minneapolis, MN, competed in theLifetime Fitness Triathlon on July 11.

Though diagnosed with SCA6 in 1992, Lenorecompeted in several ski races and triathlons until1999. After some careful consideration and plan-ning, Lenore signed up and began training for the2009 Lifetime Fitness Triathlon. In preparationfor the 0.4-mile swim, 15-mile bike ride, and3-mile run, Lenore incorporated a variety ofphysical activity into her training routine. Sheswam once a week, cycled for an hour-and-a-halfeach day, and regularly participated in chair yogaand other strengthening and stretching activities.

In addition to her training, Lenore credits thesupport of her daughter, Clara, and a close groupof friends for her success in the race. Lenorehopes to participate in next year’s race as well.

The National Ataxia Assocation wishes to con-gratulate Lenore on this athletic accomplishment– way to go Lenore!

Lenore Healy Schultz with her supporters afterfinishing the Lifetime Fitness Triathlon.

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F.I.T.T. Column:Inclusive Fitness Coalition Callfor Members and Advocates for Change!Guest columnist: Jessica Madrigal, Visiting Information Specialist, University of Illinois at Chicago Centeron Health Promotion Research for Persons with Disabilities

The substantial health benefits of regular phys-ical activity are well documented and activelypromoted among the general population.Historically, people with disabilities have notbeen included in these efforts to increase physi-cal activity and promote healthy lifestyles. Yet,the more than 50 million people with disabilitiesin the United States face even far greater healthrisks associated with sedentary lifestyles. Evenif people with disabilities want to exercise,participate in a sport, go to a gym, or just enjoythe outdoors, they often confront barriers toparticipation.

The Inclusive Fitness Coalition (IFC) wasformed to address policy, environmental, and so-cietal issues associated with the lack of inclusionand access to physical activity among people withdisabilities. The mission of the Inclusive FitnessCoalition is to facilitate an expanded coordina-tion of organizations and individuals to addressthe complexity of personal, social, cultural,political, and economic factors that inf luence,both positively and negatively, the participationof people with disabilities in physical activity,fitness, sports and recreation.

Are you a person with a disability who wouldlike to serve as an advocate for change?

Learn more about the Inclusive Fitness Coali-tion by using this link: www.incfit.org.

Join the health and fitness clubs workgroupand participate by using this link: http://incfit.org/node/187.

Join the inclusive play workgroup and partici-pate by using this link: http://incfit.org/node/185.

Subscribe to the IFC email listserv to receiveannouncements regarding coalition activitiesand inclusive fitness, by using this link: http://incfit.org/mailman/listinfo/incfit_listserv_incfit.org.

Getting involved can be as simple as participat-ing in conference calls or contacting a fitnesscenter or play area in your community toprovide resources on removing barriers andincreasing inclusion.

Please use the links above to learn more aboutthe coalition and become involved. Questions,comments or referrals can be directed to JessicaMadrigal, at [email protected] or by phone at(312) 996-5486.

The Inclusive Fitness Coalition (IFC) iscomprised of over 110 member organizationsdedicated to increasing inclusion and access tophysical activity for people with disabilities.Funding for the Inclusive Fitness Coalition isprovided by the Centers for Disease Controland Prevention (CDC) and the National Insti-tute on Disability and Rehabilitation Research(NIDRR).

Reprinted from the website of the National Centeron Physical Activity and Disability.

“This copyrighted article is reproduced from theNational Center on Physical Activity and Disabil-ity at www.ncpad.org. It may be freely distributedin its entirety as long as it includes this notice butcannot be edited, modified, or otherwise altered with-out the express written permission of NCPAD.Contact NCPAD at 1-800-900-8086 for addi-tional details.”



The National Ataxia Foundation Board ofDirectors and the National Ataxia FoundationChicago Area Ataxia Support Groups (CAASG)would like to welcome you to the 53rd AnnualMembership Meeting. Please join us at the HyattRegency O’Hare Hotel in Rosemont, IL – anorthwestern suburb of Chicago – to learn,share, network, have fun, and enjoy the sites.

The 2010 NAF Annual Membership Meetingwill bring together NAF members and their fam-ilies to meet and learn from world-leading ataxiaresearchers and neurologists, but also to buildnew friendships and reunite with old friends.Whether this is your first meeting or your 53rd,the 2010 meeting will be filled with education,celebration, sharing, and caring!

The Annual Meeting Registration Formwill be printed in the winter 2009/2010 issueof Generations and posted on our website inJanuary 2010. In the meantime, you can viewthe latest information available about theAnnual Membership Meeting on our websiteat www.ataxia.org.

The Annual Membership Meeting Programyou receive at the conference will be the mostupdated conference schedule. Please use yourMeeting Program for room assignments andtimes. Due to unforeseen circumstances themeeting schedule may change. We apologize inadvance if that occurs. Any changes will beposted in the Registration room and announcedat the meeting. For that reason we encourageattendees to plan to attend the entire meeting to

ensure that you will not miss a presentation.

Program OverviewThursday, March 11Leadership Meeting – 1:00-4:00 p.m. This

meeting is designed to provide information andsupport to National Ataxia Foundation’sChapter Presidents, Support Group Leaders andAmbassadors. The meeting is a valuable resourcefor volunteers who serve in these appreciatedpositions. If you are a leader who is unable toattend the meeting, please indicate one repre-sentative who will attend in your place. Meetingattendees will have questions and concernsaddressed, learn from peers and professionalsand have the opportunity to meet others andexchange tips and ideas. If you are interested inbecoming a group leader or ambassador, contactLori at [email protected] prior to the meeting.Internet Group – 7:00 p.m. This is your

opportunity to meet some of those Internetfriends that you have met on the NAF chatroom, NAF Bulletin Board, Internaf, Tricks ofthe Trade, Ataxia Forum, Ataxia Chat 2002,FAPG, u_r_notalone, NAF’s Facebook Group,and My Space NAF.

Friday, March 12General Sessions – Friday morning will start the

General Sessions in the Ballroom. General Ses-sions are large group presentations, typically witha medical or research focus. Many of the world’s


TheNational Ataxia Foundation53rdAnnualMembershipMeeting

Chicago,Illinois – March 12-14, 2010

By Lori Shogren, National Ataxia Foundation Special Projects Coordinator

“Winds of Progress”



leading ataxia researchers and clinicians, alongwith other ataxia experts, will be presenting thelatest research. Again, this year the General Ses-sions will incorporate practical topics in additionto the research and medical topics. A 30-minuteQuestion and Answer session will follow themorning General Sessions with a panel of thespeakers that presented during this time.Nintendo Wii Demonstration – A demonstra-

tion of the physical therapy aspects of theNintendo Wii game system will be availableFriday and Saturday from 9 a.m. to 2 p.m. Youcan try out the Nintendo Wii game system foryourself and ask questions about it. The Nin-tendo Wii system is being used in many nursinghomes and individual homes around the worldby those with limited movement abilities whowant to stay active. The demonstration is opento all ages. Persons under the age of 12 must beaccompanied by a parent or guardian who is age18 or older. This is a demonstration only. Pleaselimit your time on the system so that everyoneinterested in this product is provided the oppor-tunity to try it.Birds of a Feather – 2:00 p.m. - 5:00 p.m.Reg-

istrants will attend small group sessions. Groupswill be divided by different types of ataxia ordifferent roles that attendees are experiencing,i.e. caregiver, spouse, or parent. This is a tremen-dous opportunity to meet others who share asimilar situation or the same ataxia diagnosis.Previous attendees have said these group sessionswere the most valuable segment of the annualmembership meeting. Medical professionals willbe circulating between groups and available forquestions. Please indicate on your registrationform which Birds of a Feather session you willattend so we can finalize the meeting roomassignments.Friday Night Reception – Please join us for

a Chicago-style pizza buffet reception in theBallroom. All registered meeting attendees are

welcome to attend. Admittance to this event andfood that is provided at this event is includedwith your registration. All beverages will be avail-able at a cash bar.

Saturday, March 13General Sessions –General Sessions continue all

day in the Ballroom. A 30-minute Question andAnswer session will follow the morning andafternoon General Sessions with a panel of thespeakers that presented during those sessions.Church Services – Catholic and non-denomi-

national church services will be held on Saturdayat 6:00 p.m. for those who wish to attend.Silent Auction – The Silent Auction is a fun

way to raise funds for the continuing importantwork of NAF. This long-standing NAF traditionbegins on Saturday afternoon with the final bid-ding ending at 7:30 p.m. Auction items rangefrom something that represents your state orcountry, art work, sports memorabilia, themebaskets, hand-crafted items, hotel stays andweekend getaways. Bring an item to donate andthen have fun bidding on the items of yourchoice. Good luck!Saturday Evening Banquet – The Saturday

Evening Banquet will begin at 7:00 p.m. in theBallroom. Please get your tickets – which areincluded in your registration fee – ahead of time.You must reserve seating and select an entréechoice for the banquet in advance. The banquetwill include a plated dinner with your choice ofchicken, vegetarian, vegan, or gluten-free entréethat you select when you obtain your banquettickets. If you pick up tickets for a group ofpeople please know the entrée selections foreveryone in your party.

Sunday, March 14General Sessions – Sunday morning wraps up

the 2010 Annual Membership Meeting with thefinal round of General Sessions in the GrandBallroom followed by a Question and AnswerSession with a panel of the speakers thatpresented during this time. Don’t miss theseimportant sessions! �

Annual Membership MeetingContinued from page 15



Additional InformationConference Registration – Registration forms

will be available in the winter 2009/2010 issueof Generations and on the NAF web site, www.ataxia.org, in January 2010. Please complete theform and return it to NAF by February 15, 2010.Please fill out the registration form completely,as we need all the information to finalize plans.Registration after March 1, 2010 will only beaccepted at the conference hotel. If you arebringing an attendant, please register together onthe same registration form. Each person that isplanning on attending daily sessions, the recep-tion, or banquet needs to register. Event entrywill not be allowed without proper registrationwhich includes an official event name badge.Registration Fees – Being a member of the

National Ataxia Foundation has its benefits –one being a lower registration fee for the AnnualMembership Meetings. If you are not currently amember of the Foundation, if your membershiprenewal is coming soon or if you are uncertainof your membership status, please consider thisa great opportunity to call the office at (763) 553-0020 or go online at www.ataxia.org to become amember or renew your membership. This willprevent unnecessary extra fees or errors in yourmembership status when you register for theAnnual Membership Meeting. Thank you fortaking time to renew or become a member of theNational Ataxia Foundation. Your attention tothis detail is greatly appreciated.Video Taping – Video taping of the NAF

Annual Membership Meeting General Sessionsis prohibited without prior written consent fromthe National Ataxia Foundation.Photo Waiver – By attending the 2010 NAF

Annual Membership Meeting you give yourconsent, unless you notify us otherwise inwriting, to use your image captured during theconference through video, photographs, ordigital imagery, to be used by the National AtaxiaFoundation in promotional materials, publica-tions, and web site, and you waive any and all

rights to these images.Fragrance Free – There are many people who

experience unpleasant to severe effects fromscented products, such as perfumes and colognes.For the comfort of our attendees we ask that allparticipants refrain from wearing perfume,cologne and other fragrances, and use unscentedpersonal care products in order to promote afragrance-free environment.

About Chicago“It is hopeless for the occasional visitor to try to

keep up with Chicago. She outgrows his prophe-cies faster than he can make them.”

– Mark Twain, 1883

Chicago was only 46 years old when MarkTwain wrote those words, but it had alreadygrown more than 100-fold, from a small tradingpost at the mouth of the Chicago River into oneof the nation’s largest cities, and it wasn’t aboutto stop. Over the next 20 years, it would quadru-ple in population, amazing the rest of the worldwith its ability to repeatedly reinvent itself.

And it still hasn’t stopped. Today, Chicago hasbecome a global city, a thriving center of inter-national trade and commerce, and a place wherepeople of every nationality come to pursue theAmerican dream.

Chicago looks great from every angle, whether


The city of Chicago comes alive at night. TheUnited States’ third-largest city will be the hostof the 2010 NAF Annual Membership Meeting.



you’re exploring the city’s astonishing architec-ture during a guided tour (on foot or aboard aChicago River boat, lakeshore cruise or sight-seeing bus) or you’re enjoying the birds-eye viewfrom the 103rd f loor Sears Tower Skydeck andthe 94th f loor Hancock Observatory.

Chicago is often called a friendly city – andyou’ll agree when you accept the city’s warminvitation to sample such free attractions asLincoln Park Zoo, home to more than 1,000mammals, reptiles, and birds. Enjoy the peacefulgardens under glass at Garfield Park Conserva-tory and Lincoln Park Conservatory, or take inone of the free performances at Navy Pier.

For more in-depth information about theChicago area or to plan your trip, please visitwww.choosechicago.com, www.rosemont.com orwww.easyaccesschicago.org.

About the HotelThe Hyatt Regency O’Hare is the official

conference hotel of the 2010 NAF AnnualMembership Meeting. The Hyatt RegencyO’Hare is located near O’Hare InternationalAirport and 30 minutes from DowntownChicago. located at 9300 Bryn Mawr Avenue,Rosemont, IL 60018.

An exciting new hotel has emerged from the

classic Hyatt Regency O’Hare. Hyatt’s longtimetradition of service and extraordinary conven-ience is now expertly blended with sophisticatednew amenities and contemporary styling. Asalways, guests of the Hyatt Regency O’Hare willexperience unparalleled attention from theirwelcoming staff, complimentary shuttle serviceto/from O’Hare, and luxurious guestrooms.Additionally, enjoy the new, state-of-the-artbusiness and meeting facilities, Stay Fit Gym,new restaurants and Hyatt services - includingFast Board™ and PDA Check-in, all of whichhelp to make your stay even more delightful.

All guest rooms include a coffeemaker, a dailynewspaper, and a balcony on f loors 3-10. Fur-thermore, wireless Internet access is providedthrough T-Mobile at a charge of just $9.99 for24-hour access. Wireless access is available in theguestrooms and in all the public areas. If youalready have an account with T-Mobile (WiFi)or a Verizon wireless card, access is complimen-tary. Please visit the Hyatt Regency O’Hare’swebsite for more information at www.ohare.hyatt.com/hyatt/hotels/index.jsp.

Self parking and valet parking are available. Selfparking overnight is $20 per night. Valet parkingis $30 per night. Self parking for day use is $17per day. The Hyatt Regency Hotel has extendedcomplimentary parking for our conferenceattendees for self parking overnight and day usevisitors. NAF does not have a group rate for valetparking. To receive the group parking rate youwill need to locate a parking box in the registra-tion room or at the front desk where you willbe able to exchange the ticket you receive whenentering the parking lot for one that will allowyou in and out access on a complimentary basis.

Guest room reservations are available for aspecial group rate of $149 per night. Pleasebe sure to make your reservations by February15, 2010 in order to secure the special group rate.To book your stay online go to https://resweb.passkey.com/Resweb.do?mode=welcome_ei_new&eventID=779322&fromResdesk=true. If �


The gleaming Hyatt Regency O’Hare Hotelin Rosemont, IL will be the site of the 2010National Ataxia Foundation Annual Meeting.



you would prefer to make your reservations byphone, please call 1-888-421-1442 or (847) 696-1234 and ask for the National Ataxia FoundationConference special rate.There were a limited number of ADA

rooms available on a first-come, first-servebasis in our group block. To inquire aboutthe availability of an ADA room at theHyatt Regency O’Hare Hotel you MUSTcontact Lori at the National Ataxia Foun-dation at (763) 553-0020 or naf @ataxia.org.

If you need ADA equipment be sure and men-tion this when making your room reservation.Shower chairs, tub bars and toilet frames willbe available on a first-come, first-serve basis bycontacting the Hyatt Regency O’Hare Hotelfront Desk upon check-in.

The Hyatt Regency O’Hare is connected tothe Rosemont Skybridge. You may wish to con-tact a reservations manager at the other hotelsthat are on the Rosemont Skybridge if an ADAroom at the Hyatt is unavailable to you. Theother hotels include Doubletree O’Hare,Embassy Suites O’Hare, and Rosemont Hotel.A map of the Rosemount Skybridge can beviewed at www.rosemont.com/pdf/skybridge.jpg.

Chicago Area Services & ResourcesThe following may be used as a helpful guide

for your convenience. To download or toorder the Easy Access Chicago Guide visit www.easyaccesschicago.org or call 1-800-2CONNECT(1-800-226-6632) or 1-800-406-6418 (TTY).

Transportation and Getting ThereNAF is not responsible for transportation to

and from the hotel. The following may be usedas a helpful guide for your convenience.ADA Friendly Services at O’Hare Airport –www.f lychicago.com/ohare/concessionsohare/ADAOHare.shtm.ADA Friendly Services at Midway Airport –www.f lychicago.com/midway/concessionsmidway/ADAMidway.shtm.Complimentary Lift Equipped Shuttle – Take

advantage of the 24-hour, complimentary

shuttle service to the Chicago O’Hare Interna-tional Airport provided by the Hyatt RegencyO’Hare, which runs every 15 minutes. Followthe red Shuttle signs at the airport to the desig-nated pick-up area, O’Hare bus / Shuttle CenterDoor One. International travelers must use thecourtesy phone inside the terminal. Shuttle busesare blue with white signage that reads HyattRegency O’Hare. For pick-up between 12:00a.m. and 4:00 a.m., guests must call the hoteldirectly at (847) 696-1234.Omega Airport Shuttle – Take this shuttle to

Midway Airport, where you can pick up thecomplimentary hotel shuttle. Shuttles leaveChicago Midway Airport every hour between7 a.m. and 10 p.m. Travelers are picked up atdoor M1 at Chicago Midway Aiport. Cost is $16per person. Telephone: (773) 483-6634.Taxis – From: O’Hare Airport: Service is avail-

able on a first come, first serve basis from thelower level curb of all terminals. All taxis aremetered. Approximate cost O’Hare to HyattRegency is $10 - $12.

• From Midway Airport: Service is availableon a first come, first serve basis outside of thebaggage claim area. All taxis are metered, exceptfor f lat fare into downtown Chicago. Approxi-mate cost Midway to Hyatt Regency is $65.

• To/From Hotel & Downtown Chicago: Areavailable to reserve at the hotel concierge desk.A one way trip is 20-30 minutes at an estimatedcost of $20-30 one way.

• Accessible Taxis: More than 20 taxi compa-nies in Chicago currently operate wheelchairaccessible minivans equipped with ramps, wheel-chair securements and shoulder seat belts. Toorder an accessible taxi, call the centralizeddispatch service toll-free at 1-800-281-4466.

• For trips that originate in the City ofChicago: Find out more about Chicago’s TaxiAccess Program (TAP) at www.pacebus.com/pdf/paratransit/TAP_User_Guide.pdf.




Local Transportation – The Hyatt RegencyO’Hare is also conveniently located close to theL-Train. Guests can either take the complimen-tary shuttle to O’Hare and catch the train there,or take a short (five minute) walk to the nearbyRosemont Station. From either station, guestscan be in downtown Chicago in approximately30 minutes at a cost of approximately $2.25 eachway. The Rosemont and O’Hare stations are onthe BLUE Line. www.transitchicago.com/assets/1/maps/ctatrainmap.png and www.transitchicago.com/assets/1/brochures/Downtown_Sightseeing_Guide.pdf.

Riders with disabilities call (312) 913-3110 toapply for the RTA Reduced Fare Permit. AllMedicare cardholders are eligible to apply forthe RTA Reduced Fare Permit. Reduced FarePermit allows the permit holder and an attendantto each ride at the reduced fare. Reduced FarePermit entitles the holder to travel at reducedfares on Pace and Metra, Chicago’s suburbantransportation provider. Value can be added toReduced Fare Permits at vending machineslocated at CTA rail stations. Vending machinesaccept $1, $2, $5, $10, and $20 bills, and all coinsexcept pennies and half dollars. Maximum valueon card can’t exceed $100.

You can enjoy unlimited rides on all CTAbuses and trains with a 1-Day Fun Pass, or 3-day,7-day or 30-day unlimited-ride passes. Your passactivates the first time you use it and is good forthe number of consecutive days shown on thefront of the pass. CTA’s unlimited-ride passesmake getting to Chicago’s top attractions quick,easy and more affordable than cab rides or park-ing fees. You can purchase your CTA TransitCards and passes online at http://faremedia.chicago-card.com.Buses – Continental Airport Express at (773)

247-1200, 1-888-284-3826 or www.airportexpress.com. This airport shuttle service providestransportation between O’Hare and Midway and

all locations in downtown Chicago includingSouth Loop, West Loop, and Lincoln Park. Forstandard vans and buses, no reservation isrequired for service with departures from theairport every 15 minutes. Person requiring awheelchair accessible van should reserve at leastone day in advance. Up to two wheelchairs canbe accommodated with advanced notice. Pleasecall for current one-way and round-trip pricingand multi-passenger discounts.Parking – Both foreign and out-of-state

disability parking permits are considered valid forparking in designated accessible parking spaces inIllinois. With either a disability license plate orplace card, you can also park free at meteredparking spaces in Chicago except at those limitedto 30 minutes or less. The place card or permitmust be hung from the rearview mirror. If youare renting a wheelchair accessible van, the com-pany will provide a place card for your conven-ience. Unlike some other states Illinois does notissue temporary place cards to non-residents, sobe sure to bring your own parking permit withyou. Full details on disability parking is availableat www.cyberdriveillinois.com/publications/pdf_publications/vsd5744.pdf or call (217) 782-2709.PACE Paratransit Service – (312) 341-8000 orwww.pacebus.com/pdf/paratransit/Suburban_ADA_Guide.pdf. Pace provides ADA Paratransit Serv-ice to visitors with disabilities who do not live inthe CTA or Pace service area. To ride with PaceParatransit, visitors must present documentationthat they are ADA eligible for Paratransit Servicewhere they reside. If a visitor is unable to presentthis documentation, Pace will require documen-tation of residency and disability. Documenta-tion of eligibility for Paratransit Service forout-of-town visitors should be made at leastseven days before the first desired day of travel.Documentation can be faxed to (312) 341-8050.Allow one to two weeks for processing.

Visitors will not be provided service for morethan 21 consecutive days from the date of thefirst paratransit trip. Customers who wish to �




receive service beyond this 21 day period mustapply for eligibility with the RTA.Megabus – www.megabus.com/us. Offers daily

non-stop, express bus service between Chicagoand eight Midwest cities. Booking is done solelyvia the Internet. However, individuals whorequire a wheelchair lift must call (877) 462-6342at least 48 hours in advance. Payment is by creditcard only. Chicago’s hub for all arrivals anddepartures is located next to Union Station onthe east side of S.Canal Street, between Jacksonand Adams (downtown Chicago).Car Rentals – O’Hare - Alamo, Avis, Budget,

Dollar, Enterprise, Hertz, National and Thriftyall rent hand-controlled vehicles at O’HareInternational Airport. Agencies generally requestone to two day advanced notice for rentals withadaptive equipment. Car rental companies(except Alamo) are on the lower level near thebaggage claim areas of Terminals 1, 2, and 3. InTerminal 5, the companies are available by cour-tesy telephones located on the lower level. Avisand Budget will provide drop off/pick up serviceat airport terminals, as will Enterprise if itslift-equipped shuttle vans are not available. Allcompanies have at least some courtesy shuttleswith lifts.Accessible Van Services – The following compa-

nies provide delivery / pickup service at O’Hareand Midway Airports for an additional fee.

Midwest Mobility (847) 923-9892(847) 985-0876 (TTY)www.midwestmobility.com

Mobility Works – (630) 782-1900www.mobilityworks.com

Wheelchair Getaways – 1-800-637-2597www.wheelchairgetaways.com

Chicago Dept. of Aviation Safety Tips – (1)Never take a ride from anyone at the airport whoasks you if you need a ride. (2) Indicate to yourairline if you may need assistance at the time youmake your reservation. �

“Commit to Your Health”DVD Now Available

Commit to Your Health is a new exerciseand lifestyle video created by Kerry Westfall,of Temecula, CA. Westfall has been livingwith Friedreich’s ataxia for more than 15years, and credits his devotion to an exer-cise routine and healthy lifestyle for thephysical benefits he has experienced.Available at www.commit toyourhealth.org,

the DVD features segments on exercise,nutrition, and overall health and wellnessfrom physicians and experts in the fields offitness, nutrition, neurology, osteopathicmedicine, and cardiology.Westfall plans to make a charitable

donation to NAF through the distribution ofthe Commit to Your Health DVD.Please visit www.committoyourhealth.org

or www.ataxia.org for more information.

“Neurology Now” AvailableNeurology Now®is the official publication

of the American Academy of Neurology. It ispublished bimonthly and includes articleson neurological disorders with sectionstitled “Living Well,” “Ask the Experts” and“Resource Central.” Each issue includesinformation, resources, and inspirationalstories for those who may be affected by aneurological condition.Subscriptions are available for free by

going to the website at www.neurologynow.com to download a printable subscrip-tion form to use or share with friends orfamily members.

Patient Registries:Vital for Ataxia ResearchThose with any type of Episodic Ataxia are

invited to join the Rare Diseases ContactRegistry at http://rarediseasesnetwork.epi.usf.edu/cinch/index.htm.If you do not have internet access, please

contact the Foundation at (763) 553-0020or [email protected] to receive information onhow to register by mail. Your participation isessential for episodic ataxia research!

News & Notes



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CHICAGODining OptionsThe following is a list of dining options within 2.5 milesof the AMM hotel and at the Hyatt Regency O’Hare. Thefollowing may be used as a helpful guide for your con-venience: www.rosemont.com/pdf/map_rosemont09. jpg.

INSIDE THE HYATT REGENCY O’HARE:

Café Zalute9501 W. Devon Ave., Rosemont, IL 60018(847) 685-0206

Carlucci6111 N. River Rd., Rosemont, IL 60018(847) 518-0990

Colette5550 N. River Rd., Rosemont, IL 60018(847) 928-6951

Giannotti Italian Steakhouse4926 N. River Rd. Schiller Park, IL 60176(847) 678-2800

Gibsons Steakhouse5464 N. River Rd., Rosemont, IL 60018(847) 928-9900

Harry Caray’s Italian Steakhouse10233 W. Higgins Rd., Rosemont, IL 60018(847) 699-1200

McCormick & Schmick’s5320 N. River Rd., Rosemont, IL 60018(847) 233-3776

Morton’s of Chicago/Rosemont, The Steakhouse9525 W. Bryn Mawr Ave., Rosemont, IL 60018(847) 678-5155

Nick’s Fishmarket10275 W. Higgins Rd., Rosemont, IL 60018(847) 298-8200

Rosewood Restaurant9421 W. Higgins Rd., Rosemont, IL 60018(847) 696-9494

The Capital Grille5340 N. River Rd., Rosemont, IL 60018(847) 671-8125

Red BarInnovative food andcreative cocktails.

O’H American GrillAmerican cuisine.

PerkStarbucks coffee, bagels,sandwiches, bakery.

Room Service24 hours a day.

ROSEMONT – FINE DINING:

Wheelchair/Scooter Rentals/RepairThe following may be used as a helpful guide for yourconvenience:

The Mobility Shop(847) 412-90001-888-404-5554www.themobilityshop.com

Medserv Equipment Corp.(847) 359-4607www.medservdme.com

Personal Care AttendantsPlease note that NAF is unable to provide attendant careservices. Due to liabilities and health concerns, NAF andhotel employees are not able to provide this service.Please do not attend without making arrangements foran attendant if you need one. The following may be usedas a helpful guide for your convenience:

Pharmacy OptionsThe following may be used as a helpful guide for yourconvenience:

Walgreens (24 Hour)1-800-925-4733www.walgreens.com

CVS (24 Hour)1-888-607-4287www.cvs.com

SERVICES & RESOURCES

Senior Bridge(312) 329-90601-800-801-0420www.seniorbridge.netIn-home health careaides and companionservices.

Tender Loving Care HomeHealth Services(312) 768-51301-866-711-4852www.tlcathome.comSkilled nursing care,wound care and more.

Water Tower Nursing & Home Care(312) 280-1220www.forgoodhealth.comVisiting nurses for social care and attendants forpersonal care needs.

Wheelchair Doctors(877) 563-8585 or 1-800-295-0264www.wheelchairdoctors.orgWill travel to homes, schools and hotels for repair ofpower and manual wheelchairs and scooters.

Thorndale Pharmacy1104 Thorndale (Broadway), Chicago, IL 60660(773) 561-6660



ROSEMONT – CASUAL DINING:

Camille’s Sidewalk Café9785 W. Higgins Rd., Rosemont, IL 60018(847) 696-9767Chili’s7140 Mannheim Rd., Rosemont, IL 60018(847) 298-9031Chipotle7020 N. Mannheim Rd., Rosemont, IL 60018(847) 299-9201Cold Stone Creamery7080 N. Mannheim Rd., Rosemont, IL 60018(847) 824-6670Dunkin Donuts / Baskin Robbins9781 W. Higgins Rd., Rosemont, IL 60018(847) 318-9314Giordano’s9415 W. Higgins Rd., Rosemont, IL 60018(847) 292-2600Gold Coast Dogs7084 N. Mannheim Rd., Rosemont, IL 60018(847) 759-1520IHOP-International House of Pancakes7120 N. Mannheim Rd., Rosemont, IL 60018(847) 297-7992Laredo’s Cantina9797 W. Higgins Rd., Rosemont, IL 60018(847) 685-0673McDonald’s6150 N. River Rd., Rosemont, IL 60018(847) 825-3100Michael’s on Main Café6133 N. River Rd., Rosemont, IL 60018(847) 384-9784Pancakes Eggcetera9463 W. Higgins Rd., Rosemont, IL 60018(847) 384-9944Panda Express7028 N. Mannheim Rd., Rosemont, IL 60018(847) 824-9544Pine Grove Restaurant6580 Mannheim Rd., Rosemont, IL 60018(847) 298-5110Quizno’s Subs9779 Higgins Rd., Rosemont, IL 60018(847) 692-7900Ram Restaurant & Brewhouse9520 W. Higgins Rd., Rosemont, IL 60018

(847) 296-5760Starbuck’s Coffee9500 W. Higgins Rd., Rosemont, IL 60018(847) 696-1746Steak ‘n Shake10421 W. Touhy Ave., Rosemont, IL 60018(847) 299-3944Subway7076 N. Mannheim Rd., Rosemont, IL 60018(847) 824-3400T.G.I. Fridays9651W. Higgins Rd., Rosemont, IL 60018(847) 292-1138The Great Expoteria Restaurant9301 W. Bryn Mawr Ave., Rosemont, IL 60018(847) 692-6415Village Pizzeria9469 W. Higgins Rd., Rosemont, IL 60018(847) 823-4156

ROSEMONT – BAR/LOUNGE:

72 West (in Sheraton Gateway Suites O’Hare)6501 N. Mannheim Rd., Rosemont, IL 60018(847) 699-6300Abruzzi9519 W. Higgins Rd., Rosemont, IL 60018(847) 292-0182LeBar (in Sofitel Chicago O’Hare)5550 N. River Rd., Rosemont, IL 60018(847) 928-6951Maxie’s (in Raddison Hotel O’Hare)6810 N. Mannheim Rd., Rosemont, IL 60018(847) 297-1234Ram Restaurant & Brewhouse9520 W. Higgins Rd., Rosemont, IL 60018(847) 692-4426Red Bar (in Hyatt Regency O’Hare)9300 W. Bryn Mawr Ave., Rosemont, IL 60018(847) 696-1234Rickenbacker’s (in Holiday Inn O’Hare Int’l)5440 N. River Rd., Rosemont, IL 60018(847) 671-6350Shoeless Joe’s Sports Bar & Grille10290 W. Higgins Rd., Rosemont, IL 60018(847) 296-5760The Bar (in Embassy Suites Hotel O’Hare)5500 N. River Rd., Rosemont, IL 60018(888) 4-ROSEMON



Join us in Chicago for the Annual Membership Meeting!

The NAF Board of Directors along with theChicago Ataxia Support Groups would like to invite you to attend the

National Ataxia Foundation53rdAnnualMembershipMeeting

March12-14, 2010(Leadership Meeting March11)

The Hyatt Regency O’Hare Hotel is pleased to provide the facilities for the2010 National Ataxia Foundation Annual Membership Meeting. Rooms are available

at the special group rate of $149 per night. Please be sure to make your reservations byFebruary15, 2010 in order to secure the special group rate. If rooms are available, the

special group rate will be extended three days before and three days after the meeting dates.

There were a limited number of ADA rooms available in our group block, but all ofthese rooms are now reserved. If you are interested in putting your name on our ADAroomwaiting list, please contact the National Ataxia Foundation at (763) 553-0020.

If you need ADA equipment be sure and mention this when making your roomreservation. Shower chairs, tub bars and toilet frames will be available on a first-come,

first-served basis by contacting the Hyatt Regency O’Hare Hotel front Desk upon check in.

To book your stay online, go to https://resweb.passkey.com/Resweb.do?mode=welcome_ei_new&eventID=779322&fromResdesk=true or if you would prefer to

make your reservations by phone, please call 1-888-421-1442 or (847) 696-1234and ask for the National Ataxia Foundation Conference special rate.

Watch for the 2010 AMM Registration Form in the Winter 2009-10 issue ofGenerations.Keep checking our website, www.ataxia.org, for the latest information about the meeting.

We look forward to seeing you in Chicago!



Autumn has arrived and for many of us fallmeans a change in season, leaves turning color,cooler weather, and school in full swing. Here atthe National Ataxia Foundation, autumn is thetime of the year to begin reviewing importantataxia research applications from scientiststhroughout the world.

We are very excited and pleased about thequality and number of research applications re-ceived for this year’s funding cycle. Researchersthroughout the United States, United Kingdom,Australia, Portugal, Canada, South Africa, Italy,and Israel need our support intheir important ataxia researchefforts. More than 40 ataxia sci-entists from around the worldare asking for our support fortheir important research studieswhich focus on many of theSCAs, Friedreich’s ataxia,Sporadic ataxia, A-T, Episodicataxia, AOA, and others.

The research funds receivedthroughout the year andthrough the 2009 NAF AnnualAtaxia Research Drive will beused to support the most promising ofthese ataxia research studies. The 2009 NAFAnnual Ataxia Research Drive will begin in earlyOctober and we need your help. The bottomline is…more research dollars available meansmore important research studies funded andmore research studies mean more answers instopping ataxia.

I would like to spend a moment to let youknow how the National Ataxia Foundation’sresearch review process works. Great care isgiven in reviewing each ataxia research applica-tion submitted to the National Ataxia Founda-tion. Last year, for example, nearly 50 leadingataxia scientists and clinicians from around theworld reviewed and scored the NAF research

applications. The studies were reviewed andscored for the quality of each study, the relevanceand impact the study has on ataxia, the qualifi-cations of the researcher, past ataxia researchefforts of the applicant, along with many othercrucial factors in determining which studiesoffer the most promise.

Those scores and review narrations are thenreviewed by a scientific panel who provideadditional comments and rank each study.Those findings and recommendations are thenreviewed by the National Ataxia Foundation’s

Board of Directors who makesthe final funding decision.

Another key component indetermining the number ofstudies funded and the dollaramount committed for eachstudy are the funds available forataxia research and the fundinglevels earmarked for each typeof ataxia. Adequate funding isparamount; however, perhapseven more important is the flex-ibility to support cutting-edgeataxia research today which may

impact many of the ataxias.The National Ataxia Foundation is committed

to supporting ataxia research which shows themost promise. Some of the studies submitted forconsideration for a particular type of ataxia donot meet the quality guidelines and standards ofthe Foundation. The Foundation may havefunds available for a specific ataxia category, butthose funds may go unused because of a lack ofqualified studies for that particular type of ataxia.

Therefore, supporting NAF’s “GeneralResearch Fund” allows the National AtaxiaFoundation the f lexibility to support the mostpromising studies throughout the world. Many

From theDeskof theExecutive Director

Michael Parent




of these studies will have a significant impact onmany other forms of ataxia.

You will still have the same ability as in previ-ous years to support a specific type of ataxia, butwe ask you to consider designating your researchgift to the NAF “General Research Fund” inorder to allow the Foundation to support themost promising and far reaching studies.

If you choose to designate your gift to the“General Research Fund” or to a specific type ofataxia, the most important consideration is that

you give as generously as you can. Each researchdollar brings us closer in finding more answersand it is only through your support that we cangive researchers the tools to help them make newdiscoveries and find more answers.

Please give to the National Ataxia Foundation’s2009 Annual Ataxia Research Drive. You will bereceiving a letter shortly asking for your supportof the Foundation’s vital ataxia research effortsor you can go on-line today at www.ataxia.org tomake your 2009 research donation. Please giveas generously as you can, your support is crucialin these most important research efforts. Thankyou.

From the Desk of the Executive DirectorContinued from page 25

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My Life-Changing EventMy Life-Changing EventBy Jessica Ridley

Everyone has gone through something that hasforced him or her to rethink their lives in a largeor small way. Spinocerebellar Degeneration. Thisis a disease that is very rare and so far there islittle known about it. This disease has not onlychanged my life, but also the lives of my entirefamily.

In this essay I will explain how this event hasshaped my life.

About 11 years ago my mother was tested anddiagnosed with Spinocerebellar Degeneration. Inthis disease there is something wrong with yourcerebellum so that your balance and coordina-tion is not intact.

I did not fully understand what was going on,as I was only six years old.

My mom had to stop driving her car and sell it.When I asked her why she had to do that she toldme simply “Oh, I just can’t drive any longer.”

I had to get driven places by other people(either my friends or my mom’s friends). Thingswere starting to become more and more difficultfor her to do anything, even simple things likewalking and standing up. She had to start walk-

ing with a cane and sometimes she had to holdmy arm when she didn’t have it.

These events really shaped my life by makingme patient, because if we ever wanted to go any-where we had to take specific considerations likehow we would get there, how long it would taketo do whatever we came to do, and how wewould get home. Because she was unable to drivewe got a lot of rides from people and as a result,I know some very nice people who are willing tohelp others.

I also learned from their examples of charityhow to be more charitable myself. This made meinto a strong and humble individual. I believethat in order to live with someone who needs asmuch help as my mother does, you have to bewilling and patient and I believe I am.

Spinocerebellar Degeneration is a rare disease,and it has changed my life. I hope that by readingthis you now know how I live my life taking careof someone else because of a life-changing diag-nosis. By taking care of my mother I learned howto put someone else’s needs before my own. �



The National Ataxia Foundation was invitedto represent those with ataxia at a meeting of theParalysis Task Force (PTF) held in WashingtonD.C. July 21-23. Representatives from a varietyof patient advocacy groups and voluntary healthorganizations as well as other stakeholdersattended this meeting to discuss importantlegislation. The Christopher and Dana ReeveParalysis Act was recently passed as part of theOmnibus Public Land Management Act of 2009.Its passage holds important implications for in-dividuals with paralysis and physical disabilities.The Act mandates the development of “…anational paralysis and physical disability qualityof life action plan that promotes health andwellness in order to enhance full participation,independent living, self-sufficiency and equalityof opportunity for people with paralysis andother physical disabilities.”

Ataxia and its symptoms are not usuallydescribed using the word “paralysis,” however anew, operational definition of the term has beencreated and is inclusive of a variety of movementdisorders (including ataxia): “Paralysis is acentral nervous system disorder resulting indifficulty or inability to move the upper or lowerextremities.” (This definition was determined byefforts between the Christopher and Dana ReeveFoundation Paralysis Resource Center and theDivision of Disability and Health Policy, Centerfor Development and Disability at the Universityof New Mexico School of Medicine.) Mostpeople affected by ataxia would agree that theyhave difficulty moving their arms or legs.

One of the announcements made at themeeting was the results of a recently completedpopulation survey which found much largernumbers of people reporting paralysis (meaningdifficulty moving your arms or legs) than waspreviously thought, nearly 5.5 million people.

That large number of people can mean moreground-breaking research, education and advo-cacy for those living with this disability.

The goal of the meeting was to make recom-mendations which will form the basis of thenational action plan for paralysis and physicaldisability. Issues that were discussed included:

• Economic disparity between the disabledand abled

• Improvement of quality of life for those withdisabilities

• Training on how to select and train personalcare attendants

• Improvement of access to health care bythose with disabilities

• Better education for caregivers• Better access to recreational activitiesThere was a sincere desire by the organizers

of this meeting to hear from all voices of thedisabled community. They believe that workingacross all types of disabilities will advance theagenda to allow full inclusion and participationfor people with disabilities. More work needs tobe done, but there was a passion by the partici-pants to improve quality of life for those withdisabilities and now with the Christopher andDana Reeve Paralysis Act signed and funded,progress should be made. Keep watching forupdates.

NAF Provides Input into Action Planfor Those with Physical Disabilities

�

Matching GiftsMany employers will match your gift to

NAF. Please ask your employer if they havea Matching Gifts Program. If they do, yourgift will double in value.Each dollar contributed brings help and

hope to ataxia families across the country.Thank you for your support.



I Have AtaxiaI Have AtaxiaBy Bob Clausen

You may be wondering about my condi-tion: the walker, my difficulty in speaking, andmy inability to reach down and pick thingsup. Guessing that it might be a bit awkward forsome of you to ask questions, here is some infor-mation about my condition. If you do have ques-tions, please don’t hesitate to ask.

I have Spinocerebellar ataxia. It is a neurologi-cal impairment caused by misfires between mycerebellum (at the base of my brain) and myspinal column. It is not caused by stroke or innerear problems or circulatory problems. After lotsof testing my doctors cannot confirm just whichataxia I have, but that diagnosis may come intime. My ataxia is most likely genetic andprogressive.

My cerebellar nerve cells misfire when send-ing an impulse to the next nerve. I feel the effectswhen I am standing or when speaking or whenreaching out to pick up something. On the goodside I have no pain or vertigo and my thinking

and memory are unaffected by this ataxia.Although I am wobbly when standing, when Iam sitting, I have few symptoms. I do have fullfeeling in my arms and legs.

Spinocerebellar ataxia can begin in childhoodor anytime after that, often in middle age. It isclassified as a rare disease affecting perhaps fivepeople out of 100,000 and appears all over theworld. In my case I started showing symptomsabout six years ago, but looking back, there wereindications some time before that.

What do I do for this condition? Well, at thistime there are no magic drugs or foods or exer-cises that will cure what I have. I use a walker anda cane for balance, and fortunately our house is allon one f loor. Because stairways are difficult forme, we had Tobin Turnbough put a power lift(like those on busses) in our garage so I don’thave to go up and down steps to our home. It hasbeen a godsend for me. I continue my speechtherapy so you can better understand what I haveto say. If you don’t hear or understand what I say,please ask me to repeat. Your feedback helps meso much.

My wife Melissa and I still do much of what wehave been doing. We travel, we visit with familyand friends, we go to theater and dinner events,we are active in several car and computer organ-izations, and we are Internet surfers. We mayhave slowed down a bit, but we are still enjoyingour lives and the freedom of the open road.

Where can you go for more information? TheNational Ataxia Foundation (www.ataxia.org)has lots of information on the various forms ofataxia, on current research projects, and on pub-lications that have more details on ataxia. Brainresearch and genetic testing are important keysto finding help for patients who have ataxia,Parkinson’s, Huntington’s, Lou Gehrig’s andother neurological conditions.

New Databaseat NAF

The National Ataxia Foundation is in theprocess of adopting a new database sys-tem for our informational records and needs– including both membership and mailinglists.This new database system has many

exciting capabilities and features that willallow the Foundation to better serve ourmembers.Though we anticipate a smooth transition

to this new system, we hope you will informour staff of any issues or problems that mayarise.We appreciate your feedback and look

forward to better serving our membership.�



NAF Board Member Named to GeorgiaCouncil on Developmental Disabilities

The National Ataxia Foundation would like tocongratulate NAF Board Member and AtlantaAtaxia Support Group leader Dave Zilles on hisrecent appointment to the Georgia Council onDevelopmental Disabilities (GCDD).

Mr. Zilles will be working with the Deputy

Director of the GCDD, Dr. Pat Nobbie onlegislative initiatives as well as other appropria-tions to provide home and community basedservices for individuals with cognitive and phys-ical disabilities. We wish Mr. Zilles great successin this position! �

Development of Methods to Determinethe Pharmacodynamic Effect of HDACInhibitors on Frataxin ExpressionBy James Rusche, PhD, srVP, Research and Development, Repligen Corporation

The following is a research summary of the Kyle Bryant Friedreich’s Ataxia Translational Research Awardthat was funded in 2008.

The development of new treatments forFriedreich’s ataxia include treating symptomscaused by the genetic mutation in the frataxingene or reversing the low expression of the genefrataxin. The restoration of the frataxin proteinlevels is an approach meant to modify the courseof Friedreich’s ataxia.

Recent studies have suggested that compoundsthat change the chromatin covering the frataxingene can result in raising the amount of frataxinprotein. This observation has been shown inprimary cultures of patient cells as well as atransgenic mouse model containing a tripletrepeat expansion within the frataxin gene similarto that seen in patients. While these are promis-ing observations, the use of HDAC inhibitorschronically in patients requires methods tomonitor the effect of a specific treatment on thefrataxin gene to help guide what dose of drug touse and how often to take the drug in order toget the maximum positive effects with the leasttoxicities.

The objective of this grant was to use modelHDAC inhibitors to establish baseline measuresof compound effects on frataxin gene expression.Two model compounds were used to establish aquantitative measure of drug in blood and braintissue using a sensitive technique called liquidchromatography/mass spectroscopy or LC/MS/MS. The compounds were tested at variousdoses and the fraction of drug that could get tobrain tissue in mice was determined. The studiesallowed a comparison of drug in brain tissue oftransgenic mice and correlate that to the amountnecessary to get more frataxin protein expressed.A key finding was that the effect of increasedfrataxin protein lasted much longer than thepresence of drug. This helps consider how touse these compounds in dosing patients.

The development of these measures to corre-late gene expression with drug levels in animalblood and tissue was successful and will form thefoundation for making similar measures in bloodsamples during clinical trials in patients. �



NAF Merchandise

To order, call (763) 553-0020, fax (763) 553-0167 or mail this completed form toNational Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447

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Summer Born by Cheryl WedesweilerFictional story of a teenager whocourageously faces her diagnosisof cerebellar ataxia. Paperback. $15.95Three Wheels by Rebecca Cummings BaldwinTrue personal, heart-warming story of a womanwith ataxia. A portion of the proceeds supports theNAF. Paperback. $15.99Ten Years to Live by Henry SchutThe story of the Schut family’s struggle with heredi-tary ataxia. Paperback, photos. $8.75Living with Ataxia by Martha Nance, MDCompassionate, understandable explanation withideas on how to live with ataxia. Paperback. $14Healing Wounded Doctor-Patient Relationshipsby Linda Hanner and contributor John J.Witek, MDLearn better ways to communicate with your med-ical care providers. Paperback. $10Friedreich’s Ataxia Research CookbookJulie Karjalahti published this cookbook to raisemoney for FA research. $12Recipes and Recollections by Kathryn Hoefer SmithFull of delicious recipes and recollections. Proceedsgo towards FA research. Paperback. $10Managing Speech & Swallowing Problemsby G.N. Rangamani, PdD, CCC-SLPA basic guide to understanding and managingspeech and/or swallowing problems. $7.50Evaluation and Management of Ataxic Disorders,an Overview for Physicians by Susan L. Perlman, MDA guide for physicians treating ataxia patients.Paperback. $5

Ballads of a Family Man CD10 songs in memory of Billa Ballard. $5 of purchaseprice goes to support the work of the NAF. $13“Together There is Understanding” VHS or DVDContinuation and expansion of “Together There isHope.” 50 minutes. VHS $20 or DVD $25

SHIRTS / MISCELLANEOUS

2009 Annual Membership Meeting T-ShirtGray, long-sleeved with “Climb EveryMountain” logo. Sizes medium to XXX-large. $10Past Annual Membership Meeting T-ShirtsMeeting t-shirts from past annual membershipmeetings. Various styles, sizes and colors. $5NAF Shoulder BagBlue with white NAF logo. 11x15x2 inches. $10NAF Polo ShirtRoyal blue w/ white embroidered NAF logo. $27.50NAF Denim ShirtDenim with white embroidered NAF logo. $27.50“Ataxia is not a foreign cab” T-ShirtWhite. New design. Sizes small to XXX-large. $10“Ataxia is not a foreign cab” SweatshirtWhite. Sizes small to XXX-large. $20Window Cling or Bumper Sticker $1 ea. or 6 for $5NAF Ataxia Awareness Band Blue. One size. $2NAF Ataxia Awareness Ribbon MagnetBlue with white lettering/logo. $4Reusable Grocery Bag with NAF LogoEco-friendly, reusable grocery tote bag.Made in the USA of quality material. $5

BOOKS VIDEO / CD


Spinocerebellar ataxia type 3 (SCA3) is one ofmany dominantly inherited ataxias for whichcurrently there is no effective therapy. Becausethe disease gene in SCA3 and many other dom-inantly inherited ataxias is believed to produce a“toxic” protein, efforts to reduce the level ofsuch gene products are a logical and feasible routeto preventive therapy. Our NAF-funded studiestested whether the powerful new technologyknown as RNA interference (RNAi) could beharnessed to turn off the disease gene in SCA3,a gene known as the ATXN3 gene.

Previous studies by our group and othersshowed that expression of the SCA3 disease pro-tein, ataxin-3, could indeed be suppressedthrough RNAi. RNAi is remarkably good atregulating gene expression in cells and organ-isms. But many uncertainties linger regarding itspotential use as disease therapy for SCA3 andother neurodegenerative diseases. These uncer-tainties include whether the RNA interferencereagents will be: 1) selective for the disease gene,2) potent enough to turn off a disease gene,which is often expressed at low levels in thehuman brain, and 3) capable of targeting thevarious polymorphic forms of a disease gene inall persons with that disease. Our studies began toaddress these questions in SCA3.

To begin tackling these questions, we soughtout the “best” target sequences within theATXN3 transcript. We systematically testedsequences in both the protein coding and thedownstream (untranslated) parts of the gene. Wefound that the most easily targetable, and thus“best,” sequences resided in the 3’ untranslated

region of the ATXN3 gene. This region alsohappens to be the site in genes where most nat-urally occurring RNAi molecules bind to targetsequences. Thus, the sequences we identifiedwere in the correct biological spot, so to speak.We identified several sequences with which togenerate RNAi reagents. These anti-SCA3RNAi reagents proved highly effective atsuppressing expression of the disease gene inhuman cells.

Why were these newly designed reagents moreeffective than past reagents that we and othershave made? Well, in part because we designedthem to mimic the naturally occurring RNAimolecules that exist in all of us. These naturalRNAi molecules are known as microRNAs. Weincorporated elements of microRNA design intothese anti-SCA3 RNAi reagents. Having gener-ated these reagents, we then tested their abilityto silence a reporter gene that possessed just the3’ untranslated region of the ATXN3 gene.Indeed, they were very effective at silencing thisreporter gene. These results encouraged us togenerate recombinant adeno-associated viruses(AAV) that express the RNAi reagents. AAV canbe injected safely into the mouse brain, where itenters cells and produces the RNAi moleculeindefinitely.

While we were generating these reagents, wealso completed our assessment of the SCA3transgenic mouse published several years ago byDrs. Cemal and Chamberlain. This mouse is theideal mouse model in which to test RNAi



Using RNA Interference toSilence the SCA3 Disease GeneBy Henry Paulson, MD, PhD and Edgardo Rodriguez-Lebron, PhDUniversity of Michigan

The following is a research summary of a grant funded by NAF.


reagents because it expresses the full human genefor SCA3. If the RNAi-expressing viral reagentswork in this mouse, we would anticipate thatthey would work in human neurons as well.With the anti-SCA3 virus now in hand, and theknowledge that the endogenous form of theSCA3 disease gene can be turned off by ourreagents, we have begun injecting these virusesinto the brains of SCA3 transgenic mice. Ourgoal in these injections is to reduce expression ofthe disease gene and prevent the development ofdisease in the mice.

These studies, performed thanks to fundingfrom NAF, put us in a good position to write alarger research grant to the National Institutes ofHealth (NIH). A few months ago, this grant was

favorably reviewed by peer scientists at NIH.Hopefully, we will receive funding from NIH tocontinue the mouse studies in the near future. Itis vital that we test these RNAi viral reagents inSCA3 transgenic mice, which express the fullhuman ATXN3 gene. If our studies are success-ful in the mouse, they will constitute a critical“preclinical” step that would bring us closer todelivering anti-SCA3 RNAi reagents to peoplewith disease.

Many more steps will need to be taken beforeRNAi can make its way to the neurology clinicfor the benefit of SCA3 patients. We are nowpositioned to take the critical first step: Testingthe safety and efficacy of our RNAi reagentsin the mouse model. We will be eager to give afollow-up report to NAF describing our ongoingresults in the mouse model.


Using RNA Interference...Continued from page 31

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Town Hall Meeting with NIHDirector, Dr. Francis S. CollinsBy Carolyn DavisChesapeake Chapter Support Group Leader

On September 9, Dr. Francis Collins, recentlysworn in as Director of the National Institutesof Health, held a “Town Hall Meeting withConstituents” with over 300 medical, scientific,research, and patient advocacy organizations inattendance.

In his initial remarks, Dr. Collins emphasizedthe importance of investigator-initiated researchas the foundation of biomedical advances and theengine of biomedical progress. To encourageinnovation NIH has spent a year evaluating theirpeer review system and are now implementingrecommended changes. (See their website http://enhancing-peer-review.nih.gov.) In presenting hisvision for NIH, Dr. Collins spoke to five majorareas of opportunity.

1. Applying unprecedented opportunities in

genomics and other high throughput technolo-gies to understand fundamental biology and touncover the causes of specific diseases. Dr.Collins spoke specifically about the CancerGenome Atlas, a comprehensive effort to accel-erate our understanding of cancer, but he alsoemphasized the necessity of working togetheracross various diseases to develop prevention andtreatment options.

2. Translating basic science discoveries intonew and better treatments. Dr. Collins spokeabout the basic research necessary to developdrugs and produce new treatments. In this regardhe mentioned the TRND program (Therapeu-tics for Rare and Neglected Diseases), which wasannounced in May as a drug discovery anddevelopment program intended to stimulate �



�

How Did YouCelebrate IAAD?The 10th Annual International Ataxia

Awareness Day held on September 25 isnow history, but your stories on how thatday was celebrated and recognized couldlive on in a future issue of this newsletter!Please send your articles, photos, procla-

mations and clippings of news coverage bymail to NAF, 2600 Fernbrook Lane, Suite119, Minneapolis, MN 55447-4752 or bye-mail to Liz Werner at [email protected].

If you are interested in helping ataxiaresearch by donation of tissue after

death, please contact Dr. ArnulfKoeppen for information and details.

Arnulf Koeppen, MDProfessor of Neurology

VA Medical Center113 Holland Ave., Albany, NY 12208

Phone: 518.626.6377Fax: 518.626.6369Pager: 518.422.3491

E-mail: [email protected]

Tissue Donation

research collaborations with academic scientistsworking on rare diseases. (See their websitehttp://rarediseases.info.nih.gov/.)

3. Putting science to work for the benefit ofhealth care reform. Dr. Collins stressed theimportance of comparative effectiveness studiesthat measure the benefits different treatmentsproduce. He advocates personalized medicaltreatments and has authored a book on thesubject to be published in early 2010.

4. Encouraging a greater focus on global health.Dr. Collins indicated at the beginning of his pres-entation that supporting biomedical researchthroughout the world is an important part oftheir mission. Collaboration with philanthropiesis an essential part of this initiative.

5. Reinvigorating and empowering the bio-medical research community. In the last six orseven years only one in five grant applicationswere being funded. With the need to applyresources creatively, NIH launched its Roadmapfor Medical Research in 2004. (See their websitehttp://nihroadmap.nih.gov/about.asp.) This al-lowed NIH to consider innovative proposals forresearch that spanned various medical areasand/or were considered risky. Dr. Collins alsomentioned training programs for researchers andfostering cohesion among researchers.

In a question and answer period following his

presentation, Dr. Collins addressed rare diseaseswhich aff lict 21 million people in the UnitedStates. Now is the opportunity to push thisagenda and develop therapeutic approachesthrough NIH and private sector partnershipssuch as TRND.

The questions he posed included: Who is avail-able to enroll in a trial? Where are they located?Are they ready? Do you know the naturalhistory? Have biomarkers been established?What other resources are available?

Now is the time for this preparation.In concluding his remarks, Dr. Collins

expressed the need for help in this “marathon”of medical research in these particular areas:

• A common and consistent voice in supportof the importance of medical research, includingstories of how lives have changed,

• New and compelling ways to describe NIHresearch to decision makers and the public, and

• Keeping channels of communication wideopen between NIH and its constituents.

He invited each organization to submit a briefsummary of issues about which the Directors ofNIH and its Institutes and Centers should know.This should be sent to [email protected], input, and feedback can continue tobe submitted in this same way. We are all part ofthe team.



Seek a Miracle Ataxia Group (SAMAG)

SAMAG Celebrates its Third AnniversaryBy Chandu George

On June 26, 2006, Seek a Miracle AtaxiaGroup (SAMAG) started with a handful of peo-ple who aimed to spread awareness about ataxiaand to work for the welfare of ataxians in India.The journey was very difficult for SAMAG butslowly and steadily the group created a forum forataxians – bringing them hope and a voice.

SAMAG recently held an event celebrating itsthird anniversary of serving the ataxia cause. Thecelebration took place in June and began withthe lighting of the Indian traditional lamp bythe honorable chief guests, Mr. Satthi Reddy(ex-councilor) and Dr. Jhonsey Thomas (clini-cal psychologist and health consultant).

The SAMAG theme song was sung and a wel-come note was given by Miss Priyanka Lokray(SAMAG volunteer). Chief guests were invitedto the stage and presented with f lower bouquets.The program was presented by Satish Kumar

(sound engineer, chief spokesperson of SAMAG)and as the program progressed there was a smallskit staged and enacted by SAMAG volunteers(Sai Kiran, Sandeep, Sai Raj, Bunny, and SatishKumar). The skit’s main theme was how to ex-plain to the general public how ataxia physically,emotionally, and socially affects individuals whohave it. The skit also stressed the importance forthose with ataxia to have a positive attitude andself belief in order to create fruitful and mean-ingful lives.

Mr. Sathi Reddy said SAMAG is one of thebest forums for spreading awareness and work-ing towards the welfare of ataxians in India. Later,he distributed mementoes and certificates tomembers who were honored for serving andsupporting SAMAG from the day of its incep-tion. Dr. Johnsey Thomas shared information onwhat ataxia is and how it can be identified andadvice on managing life with it. He becameemotionally tearful while expressing his heartfeltappreciation for being associated with SAMAG.

Out of his experience, Mr. Chandu Georgeconveyed a message of how ataxians, family,friends, and society can come forward and leadmeaningful and complete lives. The concludingnote was given by Mr. Satish Kumar who briefedthe crowd about all the SAMAG activities thatare carried out to promote awareness about ataxiain India and appealed earnestly on the require-ments to achieve the objectives of SAMAG.

Finally the vote of thanks was given by Mr.George (senior), who thanked the chief guestsfor sharing their views for the occasion. He alsoexpressed his heartfelt thanks for the entireSAMAG team for their collective efforts in mak-ing this event a grand success. Members of themedia were also thanked for their coverage of �

SAMAG members ask questions during theirJune 26 meeting.



the event. The program came to a close with aninvitation for everyone who attended this meet-ing to sign a petition chart pledging their supportto work for welfare of individuals with ataxia andto promote awareness.

SAMAG Celebrates World Environment DayBy Chandu George

Seek a Miracle Ataxia Group (SAMAG) cele-brated world environment day on June 5 in India(Hyderabad) by planting tree saplings in honorof the ataxia-affected community. The plantssymbolize hope and love and generate much

needed aware-ness about ataxiain India.

SAMAG ex-tends its sincerethanks to theevent sponsors(Sri Narayanipeetam in coor-dination withShera services),and young vol-unteers led bySatish Kumar,Shalini, Ramya,Jyotsana, Chan-dana, Srinivas,

Sai Kiran, Laxmi Kanth, Govardhan and Vishnuwho did a fabulous job with their services –without whom this event couldn’t have been asuccess.

Greater Cincinnati Support GroupBy Jennifer Mueller

Things are off to a great start! We had our firstmeeting on April 20 and a second one on June 1.Both were held at Christ the Redeemer Church.There were about nine people at each meeting,with most of them having some form of ataxia,also a caregiver, a spouse, and a set of parents whohave a child with Friedreich’s ataxia. We also had

a picnic on July 25. Although it was an iffy dayweather-wise, it turned out to be a great day tohave a picnic. We didn’t have to fight for parking,for a shelter, or for tables, nor did we have toworry about bugs or terrible heat!

I am scheduling our next meeting, probably forlate September, and am hoping to have a guestspeaker attend.

Northern CaliforniaAtaxia Support GroupBy Rebecca Douglass

The July 11 meeting was opened by DeborahOmictin, group leader. Announcements weremade, newcomers were welcomed, and a deli-cious lunch was served.

The speaker of the day was Dr. Vicki Whee-lock, a favorite of the group. She is an AssociateClinical Professor in the Department of Neurol-ogy at UC Davis, and Director of the GHPPClinic. Her topic was “Ataxia and Stem CellResearch.” She outlined research in this field,from the very first stem cell therapy in the 1950’s(in the form of bone marrow transplants) to thelatest possibilities, including embryonic stemcells, adult tissue-specific stem cells and inducedpluripotent (iPSC) cells which can make multi-ple cell types. The message was encouraging and


SAMAG members at theirJune 5 tree planting ceremony.

The Greater Cincinnati Support Group at theirJuly 25 picnic.



about community services and assisted livingfacilities available in Georgia.

We also discussed our plans for InternationalAtaxia Awareness Day. This year, like the pastsix years, we will have a Proclamation signedby the Governor proclaiming September 25“International Ataxia Awareness Day in Geor-gia.” We will also have a group picture takenwith the Governor and have our annual IAADPicnic at Lake Lanier on September 27.

On November 6-8, the Abilities Expo will bein Atlanta and the support group along with EarlMcLaughlin (member of NAF’s Board ofDirectors and San Diego Ataxia Support GroupLeader) will be staffing the booth at the event.We are real excited about this opportunity tohave the Expo back in Atlanta.

Other discussion items included plans forour holiday event on December 12 as well as adiscussion about future NAF annual meetingsbeing regionally supported (by the supportgroups within a region joining forces to supportthe event both financially and with staff to runthe meeting). This would still mean only onemeeting a year but without having to rely on onesupport group to manage the whole process.The consensus of our support group was thatthis was a good idea because it would allowplenty of time to raise the necessary funds andalso move the meetings around the country toallow greater participation. �

uplifting. Research is going forward with newgrants, especially considering the lifting of theban on federal funding. Her closing statementwas significant – a quote from the first man tostep on the moon, astronaut Neil Armstrong:“One small step for man – One giant leap formankind.”

After adjournment, the planning committeefor IAAD met to formalize plans for an upcom-ing fundraiser.

Greater Atlanta Ataxia Support GroupBy Dave Zilles

On June 6, members of the Greater AtlantaAtaxia Support group participated in our secondannual fund raising event, the 50/50 Raff le, atthe Atlanta Braves Stadium. This event allows usto sell raff le tickets for the Braves organizationand receive 25 percent of the proceeds and alsoget into the game at no charge. This year wewere able to raise $572.50. We had a greatturnout and the weather was terrific.

On August 22, we held our support groupmeeting at the Emory Rehabilitation Center.Our guest speaker was Nick Williams fromUHS Pruitt Corporation, a company that pro-vides professional health care services. He talked

Chapter and Support Group NewsContinued from page 35

The Greater Atlanta Ataxia Support Group at their 50/50 Raff le fundraiser.



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West Central FloridaAtaxia Support GroupBy Crystal Frohna

The first meeting of the WCFASG this sum-mer was July 10 at our new home at MorsaniHall at USF in Tampa. Dr. Theresa Zesiewiczwas our featured speaker. She has generouslyoffered to provide lunches for our meetings andhas “loaned” me her personal assistant to handlesecretarial duties for the group. Dr. Zesiewiczdiscussed her positive results in clinical trialsusing the drug Chantix, which improvedpatients’ results up to 80 percent. The drug doeshave some side effects. Dr. Zesiewicz is currentlylooking for patients with SCA-1, 2 and 6.On August 27, FARA and the ARC (AtaxiaResearch Center) held a Symposium at MorsaniHall called “Understanding Energy for a Cure.”Speakers included the CEO of the University ofFlorida’s Health Department, Dr. Klasko, andDr. Krischer, an ataxia researcher associated withthe NIH. The founder of FARA spoke to acrowd of 150 symposium attendees about howhe founded the organization, and Dr. Zesiewiczfilled us in on the progress at the ARC. They ex-plained that if they can fix the amount of frataxina person with FA has that they are very close tofinding a cure for FA! It was all very exciting.Our ownNygel Lenz, along with Kyle Bryant,

of “Ride Ataxia” fame, and Avery Zaritskyparticipated in a panel giving the patients’ per-spective on living with FA.On September 1, I was privileged to meetTampaMayor Pam Iorio in her office along withDr. Gooch, Chairman of Neurology at USF,Paul Avery and Dr. Zesiewicz. Mayor Iorio hadissued two proclamations of IAAD, one forFARA and one for NAF. I have theNAF procla-mation in a gold case covered by glass. I plan tobring that and some pictures to our next meet-ing, which is September 12.

Tampa Mayor Pam Iorio (center) presentsIAAD proclamations to (left to right) Dr. Gooch,Chairman of USF Neurology; Paul Avery,FARA advocate; Dr. Theresa Zesiewicz, HeadNeurologist at the Ataxia Research Center atUSF; and Crystal Frohna, NAF West CentralFlorida Ataxia Support Group Leader.

Macy’s ShoppingDay for NAF

On Saturday, October 17, purchase aMacy’s shopping ticket for $5. The shoppingticket is good for 10%, 20%, or 25% off anda chance to win a $500 Macy’s gift card onshopping day. Tickets are redeemable atany Macy’s store nationwide.Please contact Tanya Tunstull at tinyt

[email protected] for tickets. All proceedsfrom ticket sales benefit the National AtaxiaFoundation.

Call for AwardNominations

Do you know a healthcare professionalwho deserves recognition for all he/she hasdone in treating your hereditary ataxia?Nominate them for a Genetic Alliance awardtoday!The deadline for the Art of Listening Award

is November 2. For more information andthe nomination form, please visit http://geneticalliance.org/ws_display.asp?filter=conference2010.awards



The following is a list of National Ataxia Foundation chapters, support groups and ambassadors. Theuse of these names, addresses and phone numbers for any purpose other than requesting informationregarding NAF or joining a chapter or support group is strictly prohibited.We encourage you to contact thechapter or group nearest you.

Chapters, Support Groupsand Ambassadors

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Chapters

Chesapeake ChapterCarolyn Davis, President1444 Crowell Rd.Vienna, VA 22182-1510(703) 759-2008E-mail: [email protected]/chapters/Chesapeake/default.aspx

Louisiana ChapterCarla Hagler, PresidentPMB 510562250 Gause Blvd.Slidell, LA 70461(985) 643-0783E-mail: [email protected]: www.angelfire.com/la/ataxiachapterwww.ataxia.org/chapters/Louisiana/default.aspx

Mississippi ChapterCamille Daglio, PresidentP.O. Box 17005Hattiesburg, MS 39404E-mail: [email protected]/chapters/Mississippi/default.aspx

Support Groups

AlabamaALABAMA ATAXIA S.G.Becky Donnelly16 The Oaks CircleHoover, AL 35244(205) 987-2883E-mail: [email protected]/chapters/Birmingham/default.aspx

ArizonaPHOENIX AREA ATAXIA S.G.Rita Garcia2322 W. Sagebrush Dr.Chandler, AZ 85224-2155(480) 726-3579E-mail: [email protected]/chapters/Phoenix/default.aspx

TUCSON AREA ATAXIA S.G.Bart Beck7665 E. Placita Luna PreciosaTucson, AZ 85710(520) 885-8326E-mail: [email protected]: www.geocities.com/azataxiasgwww.ataxia.org/chapters/Tucson/default.aspx

CaliforniaLOS ANGELES ATAXIA S.G.Sid Luther339 W. Palmer, Apt. AGlendale, CA 91204(818) 246-5758E-mail: [email protected]: http://laasg-ca.infowww.ataxia.org/chapters/LosAngeles/default.aspxJim Fritz(310) 397-5208E-mail: [email protected]

Northern CA Ataxia S.G.Deborah Omictin26840 Edridge Ave.Hayward, CA 94544(510) 783-3190E-mail: [email protected]: www.geocities.com/casupport/www.ataxia.org/chapters/NorthernCalifornia/default.aspx

Orange County Ataxia S.G.Daniel Navar829 W. Gary Ave.Montebello, CA 90640(323) 788-7751E-mail: [email protected]: www.geocities.com/ocasgg/www.ataxia.org/chapters/OrangeCounty/default.aspx

San Diego Ataxia S.G.Earl McLaughlin2087 Granite Hills Dr.El Cajon, CA 92019(619) 447-3753S.G. e-mail: [email protected]’s e-mail: [email protected]: www.geocities.com/ataxia_sdasgwww.ataxia.org/chapters/SanDiego/default.aspx


ColoradoDENVER AREA ATAXIA S.G.Charlotte DePew22632 E. Rowland Dr.Aurora, CO 80016(720) 379-6687E-mail: [email protected]/chapters/Denver/default.aspx

ConnecticutSee Tri-State Ataxia S.G. under New York

FloridaNORTHEAST FL ATAXIA S.G.John Richwine4480 Deerwood Lake Parkway #152Jacksonville, FL 32608(904) 996-0698E-mail: [email protected]/chapters/NortheastFlorida/default.aspx

WEST CENTRAL FL ATAXIA S.G.E-mail: [email protected]/chapters/TampaBay/default.aspx

GeorgiaGREATER ATLANTA AREA ATAXIA S.G.Greg Rooks320 Peters St., Unit 12Atlanta, GA 30313(404) 822-7451E-mail: [email protected] Zilles2400 Kimbrough Ct.Atlanta, GA 30350(770) 399-6710E-mail: [email protected] Robinette1971 Sumter Ct.Lawrenceville, GA 30044(770) 982-0275E-mail: [email protected]/chapters/Atlanta/default.aspx

IllinoisGREATER CHICAGO AREA ATAXIA S.G.Craig Lisack410 W. Mahogany Ct., Unit 505Palatine, IL 60067(847) 496-7544E-mail: [email protected]

Richard Carr120 South ElmMount Prospect, IL 60056(847) 253-2920E-mail: [email protected]/chapters/Chicago/default.aspx

METRO AREA CHICAGO ATAXIA S.G.Christopher Marsh5633 N. Kenmore, Apt. 059Chicago, IL 60660(773) 334-1667E-mail: [email protected]://health.groups.yahoo.com/group/u-r-notalone/www.ataxia.org/chapters/ChrisMarsh/default.aspx

IndianaSOUTHERN IN ATAXIA S.G.Monica Smith1102 Ridgewood Dr. Apt. 4Huntingburg, IN 47542(812) 630-4783E-mail: [email protected]/chapters/Louisville/default.aspx

IowaIOWA ATAXIA S.G.Emily Medina3720 Patricia Dr. #1Urbandale, IA 50322(515) 727-8713E-mail: [email protected]/chapters/EmilyMedina/default.aspx

LouisianaSee Louisiana Chapter

MaineME ATAXIA S.G.Kelley RollinsP.O. Box 113Bowdoinham, ME 04008E-mail: [email protected]

MarylandSee Chesapeake Chapter

MassachusettsNEW ENGLAND ATAXIA S.G.Donna & Richard Gorzela45 Juliette St.Andover, MA 01810(978) 475-8072www.ataxia.org/chapters/NewEngland/default.aspx

MichiganDETROIT AREA ATAXIA S.G.Tanya Tunstull20217 WyomingDetroit, MI 48221(313) 736-2827E-mail: [email protected]/chapters/Detroit/default.aspx

WESTERN MI ATAXIA S.G.Lynn K. Ball





3778 Kinview NWGrand Rapids, MI 49534(616) 735-2303E-mail: [email protected]/chapters/LynnBall/default.aspx

MinnesotaTWIN CITIES AREA ATAXIA S.G.Lenore Healey Schultz2549 32nd Ave. S.Minneapolis, MN 55406(612) 724-3784E-mail: [email protected]/chapters/TwinCities/default.aspx

MississippiSee Mississippi Chapter

MissouriKANSAS CITY ATAXIA S.G.Jim Clark6605 N. HolmesGladstone, MO 64118(816) 468-7260E-mail: [email protected]/chapters/KansasCity/default.aspx

Lois Goodman17700 East 17th Terrace Court S #102Independence, MO 64057(816) 257-2428www.ataxia.org/chapters/KansasCity/default.aspx

MID-MISSOURI ATAXIA S.G.Roger Cooley1609 Cocoa CourtColumbia, MO 65202(573) 474-7232 before noonE-mail: [email protected]/chapters/RogerCooley/default.aspx

New JerseySee Tri-State Ataxia S.G. under New York

New YorkCENTRAL NY ATAXIA S.G.Linda Johnson2849 Bingley Rd.Cazenovia, NY 13035E-mail: [email protected]/chapters/CentralNewYork/default.aspx

TRI-STATE ATAXIA S.G.Jeannie Soto-ValenciaBeth Israel Dept. of Neurology, Suite 2R10 Union Square EastNew York, NY 10003(212) 844-8711

Denise MitchellE-mail: [email protected]/chapters/Tri-State/default.aspx

North CarolinaSee South/North Carolina

OhioGREATER CINCINNATI S.G.Jennifer Mueller5530 Hamilton Ave. #24Cincinnati, OH 45224(513) 834-7002E-mail: [email protected]/chapters/JenniferM/default.aspx

OklahomaOKLAHOMA ATAXIA S.G.Darrell Owens5700 S.E. Hazel Rd.Bartlesville, OK 74006(918) 331-9530E-mail: [email protected]/chapters/DarrellOwens/default.aspx

OregonWILLAMETTE VALLEY ATAXIA S.G.Malinda Moore, CCC-SLPAlbany General Hospital1046 Sixth Ave. S.W.Albany, OR 97321(541) 812-4162 Fax: (541) 812-4614E-mail: [email protected]/chapters/Willamette/default.aspx

PennsylvaniaSOUTHEAST PA ATAXIA S.G.Liz Nussear(610) 272-1502E-mail: [email protected]/chapters/SEPennsylvania/default.aspx

South/North CarolinaCAROLINAS ATAXIA S.G.Cece Russell1305 Cely Rd.Easley, SC 29642(864) 220-3395E-mail: [email protected]/chapters/Carolinas/default.aspx

TexasHOUSTON AREA ATAXIA S.G.Angela Cloud9405 Hwy 6 SouthHouston, TX 77083(281) 693-1826E-mail: [email protected]/chapters/Houston/default.aspx �

Chapters, Support Groups and AmbassadorsContinued from page 39



NORTH TEXAS ATAXIA S.G.David Henry Jr.7 Wentworth Ct.Trophy Club, TX 76262E-mail: [email protected]/chapters/NorthTexas/default.aspx

UtahUT ATAXIA S.G.Dr. Julia KleinschmidtMoran Eye Center, U of Utah50 N. Medical Dr.Salt Lake City, UT 84132(801) 585-2213E-mail: [email protected]/chapters/Utah/default.aspx

VirginiaSee Chesapeake Chapter

WashingtonSEATTLE AREA ATAXIA S.G.Milly Lewendon14104 107th Ave. NEKirkland, WA 98037(425) 823-6239Milly’s e-mail: [email protected]: [email protected]/chapters/Seattle/default.aspx

Social NetworksNAF BULLETIN BOARDModerator - Atillaww.ataxia.org/forum/toast.asp

NAF CHAT ROOMModerator - Della (blondie)E-mail: [email protected]/connect/chat-rooms.aspx

NAF FACEBOOK GROUPwww.facebook.com/group.php?gid=93226257641

NAF MYSPACE GROUPhttp://groups.myspace.com/natlataxia

International Support Groups

Canada — British ColumbiaATAXIA SOCIETY VANCOUVERGlenn ter Borg#204-7460 Moffatt Rd.Richmond, B.C. V6Y 3S1(604) 278-0017E-mail: [email protected]: www.bcataxia.orgwww.ataxia.org/chapters/Vancouver/default.aspx

IndiaSAMAG (INDIA ATAXIA S.G.)Chandu Prasad George. CH,

H-No: 5-95/20, Sri Laxmi Nagar Colony, Old AlwalSecunderabad, 500 010 IndiaPhone: 0091-40-27961269Mobile: 0091-9949019410 Fax: 091-040-27971043E-mail: [email protected]/chapters/Chandu/default.aspx

Ambassador Listing

AlabamaDianne Blain Williamson123 Leigh Ann Rd.Hazel Green, AL 35750(256) 828-4858E-mail: [email protected]/chapters/DianneWilliamson/default.aspx

Millard H. McWhorter IIIP.O. Box 1457Andalusia, AL 36420(334) 222-3423E-mail: [email protected]/chapters/MillardMcWhorter/default.aspx

ArkansasJudy and David King17 Sanchez PointHot Springs Village, AR 71909E-mail: [email protected]/chapters/JudyKing/default.aspx

CaliforniaBarbara Bynum3801 W. BaileyMerced, CA 95340(209) 383-1275E-mail: [email protected]/chapters/BarbaraBynum/default.aspx

Mike Fernandes7251 Brentwood Blvd. #114Brentwood, CA 94513(925) 516-6906E-mail: [email protected]/chapters/MikeFernandes/default.aspx

Mike Betchel315 W. Alamos, Apt. 141Clovis, CA 93612(559) 281-9188E-mail: [email protected]/chapters/mike/default.aspx

ConnecticutTerre Di Placito107 Barton St.Torrington, CT 06790(860) 489-5092www.ataxia.org/chapters/TerreDiPlacito/default.aspx




FloridaJim Henderson3212 Lee Shore LoopOrlando, FL 32820(407) 568-9092E-mail: [email protected]/chapters/JimHenderson/default.aspx

Cindy Steever-Ziegler1534 Senior Ct.Lehigh Acres, FL 33971(239) 878-3092E-mail: [email protected]/chapters/Cindy/default.aspx

GeorgiaKristie Adams258 Beaufort Rd.Savannah, GA 31419E-mail: [email protected]/chapters/KristieAdams/default.aspx

IllinoisElaine Darte36 Lindorf Dr.Belleville, IL 62223(618) 397-3259E-mail: [email protected]/chapters/SouthernIllinois/default.aspx

KentuckyJanice Johnson8555 Brownsville Rd.Brownsville, KY 42210(270) 597-3854www.ataxia.org/chapters/JaniceJohnson/default.aspx

MarylandTim Daly(410) 715-1241E-mail: [email protected]/chapters/HowardCounty/default.aspx

Karen Rosenberger6411 Spring Forest Rd.Frederick, MD 21701(301) 682-5386E-mail: [email protected]/chapters/KarenRosenberger/default.aspx

MinnesotaLori Goetzman5179 Meadow Dr.Rochester, MN 55904(507) 282-7127E-mail: [email protected]/chapters/LoriGoetzman/default.aspx

Julie Schuur218 Cashin Dr.Luverne, MN 56156(507) 283-2555E-mail: [email protected]/chapters/JulieSchuur/default.aspx

MissouriSusan L. Strode, PhD12 Jackson #811BJefferson City, MO 65101(573) 659-4759E-mail: [email protected]

New YorkValerie Ruggiero36 West Redoubt Rd.Fishkill, NY 12524(845) 897-5632E-mail: [email protected]/chapters/ValerieRuggiero/default.aspx

Diane P. Hall210 E. Utica St.Buffalo, NY 14208(716) 881-0677www.ataxia.org/chapters/DianeHall/default.aspx

North CarolinaNorma Bryant5309-B Wayne St.Raleigh, NC 27606(513) 543-9563E-mail: [email protected]

OhioJoe MillerBox 148Mesopotamia, OH 44439(440) 693-4454E-mail: [email protected]/chapters/JoeMiller/default.aspx

Cecelia Urbanski7852 Country CourtMentor, OH 44060(440) 255-8284E-mail: [email protected]/chapters/CentralOhio/default.aspx

OklahomaMark Dvorak915 ThistlewoodNorman, OK 73072(405) 447-6085E-mail: [email protected]/chapters/Ambassador/default.aspx

TennesseeVicki Tyler �

Chapters, Support Groups and AmbassadorsContinued from page 41


7405 Birkdale PlaceNashville, TN 37221(615) 646-3024E-mail: [email protected]

TexasLinda Crawley200 Spring Grove Dr.Liberty Hill, TX 78642(245) 793-9409E-mail: [email protected]/chapters/LindaCrawley/default.aspx

Jose Julio Vela6702 Long MeadowCorpus Christi, TX 78405(361) 993-9006www.ataxia.org/chapters/JoseJulioVela/default.aspxBarbara Pluta356 Las Brisas Blvd.Seguin, TX 78155-0193(830) 557-6050E-mail: [email protected]/chapters/BarbaraPluta/default.aspxDana LeBlanc2801 W. Sunset #59HOrange, TX 77630(409) 883-5570E-mail: [email protected]: http://ladyd1973.tripod.com/index.htmlwww.ataxia.org/chapters/GoldenTriangle/default.aspx

VirginiaDick Sargent(703) 321-9143 E-mail: [email protected]/chapters/DickSargent/default.aspx

WashingtonLinda JacoyPO Box 19045Spokane, WA 99217(509) 482-8501E-mail: [email protected]/chapters/Spokane/default.aspx

International Ambassadors

American Samoa

Bob CoulterPO Box 9062American Samoa 96799(684) 688-2437www.ataxia.org/chapters/BobCoulter/default.aspx

AustraliaRenee Moore (Nee McCallum)44 Lotherton WayHocking, W. Australia 606561-8-9404-7052E-mail: [email protected]/chapters/ReneeMoore/default.aspx

CanadaSusan M. Duncan#401-1330 Richmond Rd.Ottawa, Ontario K2B 8J6(613) 820-7990E-mail: [email protected]/chapters/SusanDuncan/default.aspxPrentis Clairmont299 Somerset West, Apt. 402Ottawa, Ontario K2P 2L3(613) 864-8545E-mail: [email protected]/chapters/PrentisClairmont/default.aspxTerry Greenwood120 Sunnyside Blvd.Winnipeg, Manitoba R3J 3M2(204) 488-4155E-mail: [email protected]/chapters/TerryGreenwood/default.aspx

IndiaAbhinav Kedia207 L Model TownNear Hero GroundPanipat–132103Haryana, IndiaPhone: 0091-0180-2681157Mobile: 0091-0-9466355238E-mail: [email protected]/chapters/AbhinavKedia/default.aspx


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Share Your StoryNAF invites individuals, caregivers, friends

and family members to share personalstories about your experiences. If possible,tell how NAF has made an impact in yourlife or situation.Stories submitted should be no longer

than 1,200 words and should be sent [email protected] for publication consideration.



Calendar of EventsSaturday, October 3, 2009Gilbert SC 5K Walk, Run, & RollRegistration is from 7:45 - 8:45 a.m. Race beginsat 9:00 a.m. at the First Baptist Church, 441Lewie St., Gilbert, SC. All proceeds benefit NAF.For more information please contact Anna Hite [email protected] or (803) 532-2447.

Saturday, October 10, 2009Kansas City Area Ataxia Support Group Meeting2 - 4 p.m. at the Northeast Library, 65 WilsonAve., Kansas City, MO. For more informationcontact Lois Goodman at (816) 257-2428 orJim Clark at [email protected]/chapters/KansasCity/default.aspx

North Texas Ataxia Support Group Meeting10 a.m. - noon at the Los Colinas Medical Centerlocated at 6800 Mac Arthur Blvd. at Hwy 161,Irving, TX. Enter through the main building and fol-low the signs. Contact David Henry Jr. [email protected] for more information.www.ataxia.org/chapters/ NorthTexas/default.aspx

Northern California Ataxia S.G. Meeting11:30 a.m. - 3:00 p.m. at Our Savior’s LutheranChurch, 1035 Carol Lane, Lafayette, CA. For moreinformation contact Deb Omictin at [email protected] or (510) 783-3190. www.ataxia.org/chapters/NorthernCalifornia/default.aspx

Wednesday, October 14, 20092009 Child Neurology Society Annual MeetingOctober 14-17 at the Marriot Downtown inLouisville, KY. www.childneurologysociety.org

Willamette Valley Ataxia Support Group Meeting11:30 a.m. – 1 p.m. at Albany General Hospital,1046 Sixth Ave. SW, Albany, OR. For moreinformation contact Malinda Moore at (541) 821-4162 or [email protected]. www.ataxia.org/chapters/Willamette/default.aspx

Saturday, October 17, 2009Metro Area Chicago Ataxia S.G. Meeting1 - 3 p.m. at the Chicago Public Library – Edge-water Branch, 1210 West Elmdale Ave. (at NorthBroadway, across from Dominick’s) Chicago, IL.Dr. Gomez will be speaking about researchupdates and will host a Q&A session. Call Topherwith any questions (733) 334-1667. www.ataxia.org/chapters/ChrisMarsh/default.aspx

Tuesday, October 20, 2009Twin Cities Ataxia Support Group Meeting7 p.m. at the Presbyterian Homes of Rosevilleat 1910 West County Road D, Roseville, MN.For more information contact Lenore Schultzat [email protected]. www.ataxia.org/chapters/TwinCities/default.aspx

Thursday, November 5, 2009Abilities Expo – AtlantaNovember 5 -7 at the Cobb Galleria ConventionCenter in Atlanta, GA. www.abilitiesexpo. com

Saturday, November 7, 2009Central Iowa Support Group Meeting2 - 4 p.m. at the Urbandale Public Library in Meet-ing Room A. For more information contact EmilyMedina at (515) 727-8713 or [email protected]. www.ataxia.org/chapters/EmilyMedina/default.aspx

Greater Atlanta Ataxia Support Group MeetingAt Emory Center for Rehabilitation Medicine -1441 Clifton Rd, NE Room 101, Atlanta, GA30322. For more information contact Greg Rooksat (404) 822-7451 or [email protected]/chapters/Atlanta/default.aspx

West Central FL Ataxia Support Group MeetingNoon – 4 p.m. at University of South Florida,Morsani Hall, Room 1013 A&B. For more infor-mation e-mail [email protected]. www.ataxia.org/chapters/TampaBay/default.aspx

Wednesday, November 11, 2009Willamette Valley Ataxia Support Group Meeting11:30 a.m. – 1 p.m. at Albany General Hospital,1046 Sixth Ave. SW, Albany, OR. For moreinformation contact Malinda Moore at (541) 821-4162 or [email protected]. www.ataxia.org/chapters/Willamette/default.aspx

Thursday, November 12, 200928th National Society of Genetic CounselorsAnnual ConferenceNovember 12-15 at the Hilton, Atlanta, GA.www.nsgc.org/conferences/aec.cfm

Tri-State Ataxia Support Group MeetingMeetings are held at Phillips Ambulatory CareCenter (PACC), 10 Union Square E. New York,�



NY. To RSVP or for more information contactJeannie Soto-Valencia at (212) 844-8711.www.ataxia.org/chapters/Tri-State/default.aspx

Saturday, November 14, 2009Kansas City Area Ataxia Support Group Meeting2 - 4 p.m. at the Northeast Library, 65 WilsonAve., Kansas City, MO. For more informationcontact Lois Goodman at (816) 257-2428 orJim Clark at [email protected]/chapters/KansasCity/default.aspx

Los Angeles Area Ataxia Support GroupPizza Party2 - 4 p.m. at the Westside Center for IndependentLiving at 12901 Venice Blvd., Venice Beach, CA.Contact Sid Luther for more information at [email protected]. www.ataxia.org/chapters/LosAngeles/default.aspx


Northeast Florida Ataxia Support Group Meeting1:00 p.m. at Baptist South Hospital in Jack-sonville (off I-95) in the Azalea and Begoniarooms. For more information please visitwww.ataxia.org/chapters/NortheastFlorida/default.aspx

SE Pennsylvania Ataxia Support Group MeetingYou must RSVP to the meetings. To RSVP to thismeeting or for more information please contactLiz Nussear at (610) 272-1502 or [email protected]/chapters/SEPennsylvania/default.aspx

West Central FL Ataxia Support GroupMeeting and Luncheon1 - 3 p.m. at Feathersound Comunity Church,13880 Feathersound Dr., Clearwater, FL. For moreinformation e-mail [email protected]. www.ataxia.org/ chapters/TampaBay/default.aspx

Sunday, November 15, 2009Chicago Area Ataxia Support Group Meeting1 p.m. at the Good Samaritan Hospital – WhiteOak Room, 3815 Highland Ave., Downers GroveIL. For more information Contact Craig Lisack at(847) 496-7544 or [email protected]. www.ataxia.org/chapters/Chicago/default.aspx

Tuesday, November 17, 2009Twin Cities Ataxia Support Group Meeting7 p.m. at the Presbyterian Homes of Rosevilleat 1910 West County Road D, Roseville, MN.For more information contact Lenore Schultzat [email protected]. www.ataxia.org/chapters/TwinCities/default.aspx

Wednesday, December 9, 2009Willamette Valley Ataxia Support Group Meeting11:30 a.m. – 1 p.m. at Albany General Hospital,1046 Sixth Ave. SW, Albany, OR. For moreinformation contact Malinda Moore at (541) 821-4162 or [email protected]. www.ataxia.org/chapters/Willamette/default.aspx

Saturday, December 12, 2009Greater Atlanta Ataxia S.G. Holiday PartyAt Emory Center for Rehabilitation Medicine,1441 Clifton Rd,, NE Room 101, Atlanta, GA . Formore information contact Greg Rooks at (404)822-7451 or [email protected]. www.ataxia.org/chapters/Atlanta/default.aspx

Kansas City Area Ataxia Support Group Meeting2 - 4 p.m. at the Northeast Library, 65 WilsonAve., Kansas City, MO. For more informationcontact Lois Goodman at (816) 257-2428 orJim Clark at [email protected]/chapters/KansasCity/default.aspx


Orange County Ataxia Support GroupMeeting and Holiday Get-Together1:30 - 4 p.m. at Orange Coast Memorial MedicalCenter (basement, next to the cafeteria), 9920Talbert Ave., Fountain Valley, CA. For more infor-mation contact Daniel Navar at [email protected]/chapters/OrangeCounty/default.aspx

Tuesday, December 15, 2009Twin Cities Ataxia Support Group Meeting7 p.m. at the Presbyterian Homes of Rosevilleat 1910 West County Road D, Roseville, MN.For more information contact Lenore Schultzat [email protected]. www.ataxia.org/chapters/TwinCities/default.aspx �


Janet AdairTimothy AdkinsRemo AgostiniSherri AlexanderAlexander FamilyMichelle AliotoCrystal AllsoppFloyd AndersonGerry AndersonRobert AndersonWayne AndersonlJeffry BaileyVicki BaloghDonald BantaTereess BastionJoey BearerBetty BeckClair BeckKay BellTom BellCheryl BelslyJohn BergMary BircherKim BishopStephanie BlakeDia BlanchardGeorge BlankMichael BohleStanley BohleFrank BorioTina BoudreauxMyrl BranscomMichael BreedloveJohn BrennanNancy Brophy-BrooksCarlton BrownEmma BrumbachCletus BrunnertKyle BryantMargie BryantRuth BuckleyPeggy BurttramNikki CaldeiraBrenda CallisEdward CallisAmanda Carrell

Juanita CarterChris CaseyJosh ChaldraftVirginiaChapman-Horel

LeilaChapman-White

Charby CharbonneauClementz FamilyTodd CotesDebora CovingtonJeremiah CoxJanet CoyneHal CrawfordLinda CrawleyCarissa CreasyRussell CrystalJohnny DaigleBetty DampMary DansonThomas Di PietroConstanceDiVincentis

Doris DixonDi Geronimo FamilyOlivia DouglassDenise DrakeNaomi DrozDawn DudleyDenise DudleySandy DudzicRev William Dugal IIIBuz EarnhartKathy EarnhartLola EarnhartPhillip EarnhartAndrew EgeressyBetty EisenhaurBetty EisenhaurFamily

Carol ElaineLee EngelCandace EnosDan EustacheJoseph FalconKatherine Falcon

Trinity FalkMatthew FarrowCharlie FisherKevin FlemingJanet FountainJulie FrenzGarnett FryeMark FrykmanMary FuchsMonella FugateTiffany GambillGregson GannJohn GannonRita GarciaLucy GaskillTanya GoldmanJoe GolminasPenny GolminasSteve GolomskiEdith GrahamBrenda GranerLawrence GranerJackie GuercioPaschal GuercioCraig HaarsmaDonald HardyMary HartmannGary HartsockBurton HarwickClinton HatchDr. Jerry HauserJeffrey HelmanMichael HelmanJason HelmsDavid HesterAlice HicksDenise HigdonJohnny HoganPatricia HoganHelen HorndaschSidney HowellRobert HudsonBuddy HughesKrista HumesHoward HunniusDonna Huskins

Wanda JablonskiLisa JaffeRinda JanneyKerry JohnsonTerry JohnsonYvonne JohnsonBetty JonesJoseph JonesEileen JubinaMaureen JurekFred Kaffke, Jr.Jeffrey KahnKeiko KainMaddie KannadyBarry KarasNorman KarasKyle KeefeJames KeenHakim KhanSalim KhanSusanne KhanDave KingJudy KingGrace KirkwoodJean KnappJamie KosierackiKarin KoskiAlan KozupskyHelen KozupskySuzanne KremenBrant KruenMarcella KukelhanSally KukelhanNormand LaBarreJohn Lane, SrPeter LanzendorferGerald LaukhufLorrie LaukhufCarl LauterDwayne LeBlancLinda LeeAmy LenahanTony LewendonPhyllis LindbergPeggy LittlejohnRita Lobascio

Stephanie LovelockDavid LowsleyRalph LucianiAdam LukewSid LutherCarly MagnusonMartha MakohonRebeccaMandernach

Calvin MarinDeborah MarkhamBradley MasserantCarolyn MasserantJohn MatthewsBlanche MaxwellBetty McAdamMaury McDonaldAlisa McFarlandJoAnn McKee-O’Hern

Charles McLaughlinEarl McLaughlinReggie MellonDebra MichaelHarvey MillburgThomas MillerLauran MontgomeryMitzi MontgomeryM/M Jack MoonJack MooreDolores MorelloMark MoreyDale MormanCarol MullenNancy MurphyThomas MusilliGrace MutschlerTommy MyersDena NaquinRay NaumanMark NewellT.J. NewellAlayne NovalanyJean O’ConnorTom O’ConnorBrent Ofenstein

Memorials and InYour HonorThe National Ataxia Foundation is grateful to those who have made contributions in memory or in honor

of their friends and families whose names are listed below. This list reflects contributions made fromMay 2009 through August 2009. We are sorry that we cannot separate the memorial contributions fromthose made in honor of someone, as sometimes the person making the contribution does not let usknow if the contribution is a memorial or in honor of their friend or family member.


�



Steven OfensteinSharon OlsenDeborah OmictinCathryne OverstreetDarrell OwensBlanchett Parker, Sr.William PavukNorma PayneCory PembertonSean PembertonDr Neil PerkinsEd PetticrewPatricia Phillips-RustMarty PilgrimFamily PisanoDavid PlutaAlice PogorzelskiNello PoliIkue PollakDavid PriceErnie PrinceJulie Quinlivan

V. RamachandranRolando RamosCharity RangerBrett ReedLaura RiermaierDebora RiesJanet RileyNathan RobinsonCarolyn RogersGloria RosenzwiegMelanie RosthauserWilliam RoyJames RussellTim RyanKenneth SaundersArthur ScheerJeff SchefflerJosephinaSchembre-McCabe

George Schenck, Jr.Mary Schmidt

BrunoSchraermeyer

LeticiaSchraermeyer

Yvette ScimoneBarbara SeguinDerek SemlerMichael SevenskiFamily

Collin ShannonCynthia ShannonKevin ShannonCarol SilvaLinda SimonCasey SniderTerry SniderPatricia SobczakChai SocietyAbbie SpellmanJoseph StamlerDr. Charles SteinerMarilyn Stevens

April StewartLucile StroupeJody Stutchbury-Raposo

David SummersJohn SurabianGail SuttonRachel SuttonRuth SwabackKory TaborScott TaborErnest TalaricoKim TaylorJoseph ThellQuentin ThellFayne ThielNeil ThompsonAlan TindallMark TokarzDr. Aymee Torres-Michels

Penny Tressler

Amy TuckerVivian TuleyVirginia TurnerJoseph TylkaDenise Van VoorhisAntoinette VarronDonald WalkerWilliam WalkerCarolyn WatkinsGuy WatkinsDavid WestrickJames WheelerHelen WhiteAnna WidingLena WindhorstConnie WolffPearl WomeldorfJoan WoodwardMargaret WorkingErma WrightPete ZarmakoupisJon Zilles �

Advancing Rare Diseases ResearchRare disease research for disorders such as

ataxia faces unique challenges. The affectedpopulation is small and geographically dispersedmaking it difficult for drug companies to recoupthe costs of developing treatments. In addition,patients with rare diseases are frequently mis-diagnosed or undiagnosed.To advance medical research on rare dis-

eases, the National Institutes of Health estab-lished the Rare Diseases Clinical ResearchNetwork, (RDCRN) which consists of 10research consortia; each to study a group ofrelated rare, and sometimes fatal diseases.Each consortium includes physicians, investiga-tors and an active patient advocacy group.The National Ataxia Foundation is a member of

the consortium for Clinical Investigations of Neu-rological Channelopathies (CINCH) which stud-ies episodic ataxia in addition to other similardiseases. On July 16 a meeting was held inWashington D.C. to highlight the successfulresearch advances that have taken place in thepast five years since the initial funding for theRDCRN was granted.The National Ataxia Foundation, as a member

of CINCH, was represented at that meeting

during the scientific poster session. In additionRobert Griggs, M.D., F.A.A.N., the principle in-vestigator for CINCH, was a presenter at themeeting. He spoke on the challenges and op-portunities in rare disease research. Joanna Jen,M.D., Ph.D. who serves on NAF’s MedicalResearch Advisory Board gave an excellentpresentation on training professionals for raredisease research and shared her own growthand development as a clinician and researcher.Steve Groft, the director of the Office of Rare

Diseases Research summed up the day, ex-pressing the value of having patient advocacygroups fully engaged with research efforts,particularly with patient registries and tissuebanks. He added that because the NIH hasfound better ways to fund researchers, becausemore is known about these diseases andbecause of the genome project, we are currentlyin the golden age of rare disease research.The future focus of the RDCRN is that the

needs of families and patients with rare dis-eases will continue to be addressed throughcoordinated research efforts, new approachesto diagnosis and better treatments and preven-tive strategies.


Non-ProfitOrganizationU.S. PostagePAID

Madison, SDPermit No. 32

National Ataxia Foundation2600 Fernbrook Lane, Suite119Minneapolis, MN 55447-4752(763) 553-0020

GIFT – HONOR – MEMORIAL

A contribution given in memory of a friend orrelative is a thoughtful and lasting tribute, asare gifts to honor your friends or family. AGift Membership is a wonderful gift to a friendor relative for special occasions like birthdays,graduations, anniversaries, and holidays. NAFwill acknowledge your gift without reference tothe amount.

Simply fill out this form and mail with your checkor credit card information to the National AtaxiaFoundation.

Honor/Memorial envelopes are available free ofcharge by writing or calling NAF.

My contribution is:

� In Memory � In Honor � Gift Membership

Name ________________________________

Occasion _____________________________

Send Acknowledgment Card to:

Name ________________________________

Address ______________________________

City/State/Zip __________________________

From:

Name ________________________________

Address ______________________________

City/State/Zip __________________________

MEMBERSHIP

Yes, I want to help fight ataxia! Enclosed ismymembership donation, which enables NAF tocontinue to provide meaningful programs andservices for ataxia families. (Gifts in US Dollars)� Lifetime membership $500 +

Annual memberships:� Patron membership $100-$499� Professional membership $45 +� Individual $25 +� Household $45 +� Addresses outside the U.S. please add $15

Your Name ____________________________

Address ______________________________

City/State/Zip __________________________

E-Mail ________________________________

PAYMENT INFORMATIONGifts are tax deductible under the fullest extent of the law.

� Check. Please make payable to theNational Ataxia Foundation.

Total Amount Enclosed $ _________________

Credit Card: � Visa � Master CardName on Card _________________________Card # _______________________________Exp. Date_____________________________Signature _____________________________Phone Number ________________________

Is your address correct? Are you receiving more than one issue of Generations? If there are anychanges that need to be made, please call NAF at (763)553-0020 or e-mail [email protected]. Thank you!

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