THE ILLUMINATOR - Batten Disease Support & Research ... · ILLUMINATORTHE HIGHLIGHTS OF ......

Volume 26, Number 3 | Fall, 2015

ILLUMINATORTHE

HIGHLIGHTS OF WHAT’S INSIDE

3 News from our Supporters 6 Conference Numbers 8 A Mom’s Journey10 Mink Award13 BDSRA Book Shelf 14 In Loving Memory

OUR STAFF

Margie Frazier, PhD Executive Director800/448-4570, ext. [email protected]

Becky Hetteberg, MA/LISWDirector of Family Support and Education800/448-4570, ext. [email protected]

Tracy KirbyDirector of Development800/448-4570, ext. [email protected]

Noreen MurphyProject Coordinator800/448-4570, ext. [email protected]

1175 Dublin RoadColumbus, Ohio 43215800/448-4570 866/648-8718 (Fax Toll Free)

facebook.com/bdsra twitter.com/bdsrawww.bdsra.org

BDRSA BOARD ANNOUNCES 2014 RESEARCH AWARD WINNERS

In 2014, the BDSRA reached out to dozens of researchers to invite Letters of Intent (LOI) or short proposals to preview work they would like to accomplish in the following year with a maximum of $60,000. Once these LOIs were narrowed to requests for full proposals, nearly 30 researchers from universities, children’s hospitals, and industry stepped in to provide peer reviews on a volunteer basis.

Noah’s Hope, Drew’s Hope, Hope4Bridget, BDSRA-Australia and the Batten Disease Family Association in the United Kingdom have partnered with BDSRA to co-fund these important projects.

Heather Adams, PhDUniversity of Rochester “Meaningful Endpoints for Phase III Clinical Trials in Juvenile Batten Disease” (CLN3)

This work helps researchers working in the Juvenile, CLN3 world have a guidepost on which to judge if treatments are working. The meaningful endpoints will be informed by years of work with CLN3 patients and their families.

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2 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570 Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 3

Steven Gray, PhDUniversity of North Carolina, Chapel Hill “INCL Gene Therapy Using AAV9 Vectors” (CLN1)

Dr. Gray’s project will further the investigation of the use of gene therapy in mice to determine how best to translate this technology to humans, based on clinical trials ongoing in GAN (Giant Axonal Neuropathy) patients.

Michelle Hastings, PhDRosalind Franklin School of Medicine and Science “Antisense Oligonucleotides for the Treatment of Juvenile Neuronal Ceroid Lipofuscinosis” (CLN3)

CLN3 is most commonly caused by a 1.02kb deletion that encompass 2 exons—7 and 8. The loss of these exons causes ‘misreading’ of the mRNA and ultimately not allowing whole bodily systems to work correctly. This research seeks to correct the way the mRNA functions fixing the string of proteins that affect CLN3.

Michelle Hastings, PhDRosalind Franklin School of Medicine and Science “Stop Codon Read-through and Nonsense Suppression for the Treatment of Infantile and Late-Infantile Neuronal Ceroid Lipofuscinosis” (CLN2)

Infantile and Late-infantile neuronal ceroid lipofuscinosis (INCL and LINCL) are caused by mutations in CLN1 and CLN2 genes. Dr. Hastings will use gene ‘correction’ techniques developed for other rare diseases to develop functional genes in these forms.

Tammy Kielian, PhDUniversity of Nebraska “Astrocytic Thrombospondin-1 in Juvenile Neuronal Ceroid Lipofuscinosis: Impact on Synaptic Dysfunction” (CLN3)

The aim of Dr. Kielian’s work is to test treatments that work against the inflammatory processes in neurons that are believed to contribute to degeneration in the CLN3 form of Batten. With this BDSRA collaboration she hopes to slow the progress of the disease.

Peter Lobel, PhD Rutgers, The State University of New Jersey “Crossing the Blood Brain Barrier: Enzyme Replacement Therapy for LINCL” (CLN2)

The overall goal of this research is to identify superior enzyme replacement therapies (ERT) for CLN2. It is hoped that the work could

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also translate to other membrane soluble forms such as CLN1 and CLN5. By studying alternate routes for enzyme replacement therapy, Dr. Lobel’s team will advance knowledge about safety and efficacy of ERT use in Batten disease.

Sara Mole, PhDUniversity College London, United Kingdom“NCL Mutation and Patient Database”

BDSRA supports efforts to aid researchers, clinicians and families of all forms of the disease. The NCL Mutation database is a trusted resource developed and maintained by Dr. Mole and acts as a global gateway for those who need accurate and accessible information about Batten disease. For detailed information, visit: http://www.ucl.ac.uk/ncl/

David Palmer, PhDLincoln University, Christchurch, New Zealand“Viral Mediated Gene Therapy in Ovine Batten Disease” (CLN5 and CLN6)

BDSRA-Australia continues this important work in gene therapy of CLN5 and CLN6 sheep flocks in New Zealand. By learning more about how both of these Batten forms in soluble and membrane-bound proteins, we hope to know more about treating other forms with these structures.

NEWS FROM OUR SUPPORTERS

OHIO EVENT RAISES AWARENESS

This May in Vaughnsville, Ohio, the “Team Kate 5K” took place on a beautiful sunny morning. Kate’s parents Brock and Ellie Benroth organized the event with the help of many volunteers for the 100 runners and walkers who attended. The Benroths donated $3,500 to BDSRA following the 5K.

RUNNERS KICK BATTEN The 4th annual “Kick Batten’s for Carl 5K/10K Fun Run/Walk” took place during Batten Awareness weekend in Arlington, Washington. It was a day filled with music, raffles and lots of memories. Over $3,200 was donated to BDSRA from the event.

RIDERS RALLY IN OHIOMore than 30 riders participated in the “Westley’s Wish Run for Batten Disease” in Logan, Ohio, this July. The riders had 6 stops along their 75 mile ride throughout southeast Ohio. They graciously donated $1,000 to BDSRA.

NEWS FROM OUR SUPPORTERS

KIWI AND AUSSIE FAMILIES CELEBRATESeptember brought travel to the South Pacific for days of learning and celebration. At Lincoln University in Christchurch, New Zealand, researchers Palmer, Hughes, Tammen and colleagues provided a day of research updates in gene therapy in CLN5 and CLN6, developments in brain imaging techniques and translational possibilities. New Zealand Batten families were in full force to share stories and ideas. Thank you to BARN (Batten Animal Research Network) for all you’re doing.

20 YEARS DOWN UNDER On September 26th, the Australian Chapter of BDSRA celebrated 20 years. After the morning general meeting, founding members, researchers and Director, Vanessa Anderson gave moving talks about the strides made in Australia and New Zealand in the last 2 decades. A champagne toast and lunch capped the wonderful day of reflection and congratulations.

CURE KIDS NZ TEAM UP WITH RUGBY’S ALL BLACKS AND ENTERTAINMENT INDUSTRY FOR BATTEN RESEARCH It has been an amazing year for the All Blacks rugby team from New Zealand as the won the World Cup in London, October 31st. In the weeks leading up to the championship, Cure Kids NZ teamed with them and entertainment industry powerhouses Peter Jackson, Lorde, Brooke Ashley and others to produce a song for charity. Watch the skit and listen to the Team Ball Player Thing song. You can buy the song on iTunes and support Batten research!

http://allblacks.com/Video/Viewer/24622/team-ball-player-thing-full-skit-and-song-

Australian families celebrate 20 years of support and research strides.


New Zealand families welcome

Americans, enjoy lunch and talk

All Blacks rugby!

Ra Timms, chapter leader and member,

Linda Dougan present David Palmer $10,000

for research.

Margie Frazier, Dave Lippert, Graeme and Vanessa Anderson (director AUS BDSRA) have coffee at the beach in Killarney Vale, Australia.


25 YEARS OF THE

SIBS PROGRAM

CONFERENCE BY THE NUMBERSCONFERENCE BY THE NUMBERS

450 ATTENDEES

3 MINIATURE

THERAPY HORSES

1200+ MEALS SHARED

6 THERAPY DOGS

79 SIBS RECONNECTED

1 FANTASTIC SIB SONG SATURDAY EVENING

Thank You, SponSorS!

SAVE THE DATE FOR THE BDSRA FAMILY CONFERENCE 2016WHERE: ST. LOUIS MISSOURIRENAISSANCE ST. LOUIS AIRPORT HOTEL9801 NATURAL BRIDGE RD, ST. LOUIS MO WHEN: JULY 14-17, 2016

BE SURE TO FOLLOW OUR FACEBOOK PAGE FOR UPDATES.

BDSRA IS ALL ABOUT FAMILIES CONNECTING

WITH EACH OTHER

Help us update the BDSRA family directory. If you would like to be

included, please send your name, address, contact

information and affected person’s name and NCL type

to [email protected].

This information is for the directory only. BDSRA does

not sell or share the directory with outside companies

or organizations.

Fire up a cure

SPONSORSPARTNERS($1,000 TO $4,999)

Tim and Kris CoonCatie and Annie’s Cops – MemorialRick and Katie Godfrey Sibs ProgramDrew’s Hope Research

FoundationGayle Holton Design – Program Design Holding onto Kate Hope 4 Bridget – Sibs Program – raised by

Harrison Kennicott, Emily VanHoutan and Nolan Gahlbeck

Dave Lippert and Margie Frazier

Bob and Karen Jensen – Sibs ProgramMary Payton’s Miracle

Foundation – First Time/Newly Diagnosed Session and T-Shirt Sponsor

Mackenzie’s Hope – Sibs Bowling Party and T-shirts

McGladrey LLP Center for Business Transition

Metro NY/NJ Chapter BDSRA

Midwest Chapter BDSRA – Life Goes On and Coffee

BreaksNationwide Children’s Hospital

– Life Goes OnNick’s Battle Foundation – T-shirtsNoah’s Hope – Sibs Program

– raised by Harrison Kennicott, Emily VanHoutan and Nolan Gahlbeck

NuMotionOrsini Healthcare – Life Goes

OnSanford Children’s Research

Center – Sibs Programming

SUPPORTERS($500 TO $999)

Ethan’s Reason – Sibs Bowling and Pizza Party

Gardner Denver IncRon and Lugine HeinKatelyn’s Faith – Sibs Bowling

and Pizza PartyKen HensleyRandy and Darlene RoyaltyXoNovo

CHAMPIONS($10,000 AND ABOVE)

ADVOCATES($5,000 TO $9,999)

Anonymous

Special

THANKSWe would like to thank the Midwest Chapter volunteers for their deeply appreciated contributions to this year’s conference:

Mike and Dawn Collins

Dave and Corrina Dahl

Norb and Jacque Farnaus

Dave and Sara Kennicott

Wayne and Trina Kiefer

Larry and Barb McDonough

Chuck and Tini Montavan

Randy and Darlene Royalty

Jim and Linda Smith

Steve and Bonnie Thompson

Tracy and Jennifer VanHoutan

And to all those who volunteered, advised, advocated, presented, donated and encouraged, we thank you for your generosity and contributions.

– Nursing Care


One Mom’s Journey to ConferenceOn July 9, 2015, Jay, Madison, Nathan, my Mom and I traveled to Chicago, IL for the Annual Batten Conference. I have to admit, I was a bundle of nerves. I had run through every scenario in my head. It started with arriving at the airport. How would check in go, how about the flight? Nathan can have a hard time on long flights and I don’t like to disturb anyone. How far would the drive be to the hotel? We were traveling early and the first event was that night. Would he last the day without having a meltdown? As you can see that is a lot of worry just to get us to our destination. Then I had the additional stress of the conference. I had NO idea what to expect. I was thrown into this world on June 10th and had no idea the family that would be waiting for us.

We had been corresponding with several families via Facebook on a Batten page for families and we were eager to put faces to names. But I would be lying if I said I wasn’t scared to death. It is really hard for me to go into new situations. Especially situations where I don’t know what to expect.

I remember being nervous walking in and the very first thing we did was go to a newly diagnosed family meeting. That is where all the families who have been diagnosed over the last year would meet their host family and have a chance to ask questions or just

take a deep breath. I remember being very overwhelmed in that moment. We then went on to a cocktail party where we just got to visit with all the other families. I finally got to put so many faces to so many of the children’s pages that I follow. That is the night Nathan met his new buddy Joey. It was like looking at a mini version of Nathan. Joey is so similar to Nathan is so many ways. For the first time ever I felt this amazing feeling like there is another kiddo who is like Nathan. Nathan has always been so unique. It was like no one ever understood him but in 3 minutes of their meeting, Nathan and Joey were buddies.

Pictured above: Nathan, Stacey, Madison and Jay Hiltman

The next morning started with Jarrett Payton speaking. We arrived a few minutes late and were not quite sure who he was. I kept asking Jay “who is that”? All he could say is, “I think it must be an athlete of some sort.” He kept talking and there were stories of Michael Jordan being at his house and going to basketball games and seeing Scotty Pippen. Even I, who doesn’t know much about sports, knew those names. But I still couldn’t figure out who he was. He gave a wonderful speech and near the end made a comment about his Dad being called “Sweetness”, Jay leaned over and said that is Walter Payton’s son! Ok, even that one I knew. He finished his speech and a few minutes later left. I have no idea what came over me but I became very emotional. I needed a minute to myself. I left the conference room and was walking towards the door in the lobby and I could see Jarrett walking back in. As he got closer to me, he grabbed my arm and said “Are you ok?” I immediately started sobbing and told him that no, I was not ok. I proceeded to tell him that our son was just diagnosed on June 10th and was feeling very overwhelmed and needed a minute to breathe. He told me at he was in his car and ready to go home but something was telling him to come back in and that I was the reason he needed to come back. He gave me a huge hug and comforted me. It was a very odd encounter. I had not cried up until that point except for at the doctors office in June. And here I was crying to a complete stranger. He told me a really nice story about his dad and we had a nice conversation until I could compose myself a little better.

We spent the next three days in jam packed sessions. We met with scientists, doctors, researchers, affected families and extended members of those families. In fact there was one scientist who was there that 24 hours prior had been running with the bulls. He jumped on the plane to be at this conference. There were over 400 people in attendance at this year’s conference. It was the biggest turn out yet. We had mini sessions that we would go to. We learned about how to better navigate an IEP, how to communicate our needs to our spouse, how to speak with doctors and get them in touch with the experts in the field, what new doctors might be good to add in to our mix. There was one session on caring for the caregivers. It taught us that it is ok to ask for help, which is something that Jay and I both struggle with but are trying really hard to get better at. One night Jay and I stayed up until 2 in the morning talking to a couple other dads and that night I could have been an expert on seizures.

It is amazing what all these families have gone through. All of these children are so different, but yet we have all traveled such similar journeys. Some like us it has taken years to get the proper diagnosis. Trying different medications to try to curb an undesirable behavior when in reality, that was never the issue. I think about all the things that we have put Nathan through that maybe we didn’t need to if we had known.

I believe that Nathan has always tried so hard to fit into a box that didn’t quite fit him. Yes, he has had friends at school and he is happy, but I have never seen him as happy as he was during those three days. He fit, he belonged and people just got him. He discovered that he was quite charming with the ladies and there were several marriage proposals and kisses on the checks or hands. And he even discovered all the gentleman’s beards and was not afraid to ask to feel them. Everyone obliged and was very gracious about it. There was not single person there that didn’t understand when Nathan was having a problem. It was normal behavior and I cannot tell you how good it felt to be


ESTEEMED BATTEN CLINICIAN AND RESEARCHER, JONATHAN MINK, AWARDED OLIVER SACHS AWARD BY TOURETTE ASSOCIATION.

Jonathan W. Mink, M.D., PH.D., the Frederick A. Horner, MD Endowed Professor in Pediatric Neurology and Chief of the Division of Child Neurology at the University of Rochester Medical Center (URMC), is the recipient of the inaugural Dr. Oliver Sacks Award for Excellence in Tourette Syndrome (TS). The award was developed in connection with the 1st World Congress on Tourette Syndrome and Tic Disorders (being held June 24 -26 in London, UK), which is organized by the Tourette Association of America and other international partners. The award honors Dr. Sacks’ many contributions to public understanding of Tourette Syndrome and his decades of support of the Tourette Association.

“It is an indescribable honor to receive the first Oliver Sacks Award from the Tourette Association of America,” said Dr. Mink. “Dr. Sacks is a personal hero of mine and was an inspiration for me to become a neurologist. It is especially gratifying to be recognized by the Tourette Association, an exemplary organization that I hold in the highest regard for their outstanding work in advocacy, education and research programs that benefit the Tourette Syndrome and Tic Disorders community.” BDSRA sends hearty congratulations to Dr. Mink with thanks for his work in so many rare neurological diseases.

CELEBRATING 30 YEARS OF BDRSA

We are excited to announce planning for the 30th anniversary of BDSRA has begun! The 2017 Annual Family conference will be in Pittsburg, Pennsylvania, July 6th-9th. We would appreciate if you could share photos and memories with us so that we can begin putting together a living history of the organization.

Please send everything to [email protected].

Have you liked us on Facebook?

Followed us on Twitter?

Find us and join the BDSRA

conversation online!

facebook.com/bdsra

twitter.com/bdsra

www.bdsra.orgsurrounded by understanding. I said it many times that weekend that I didn’t want to leave the bubble.

There were groups for the siblings as well. Madison had lots of kids to hang out with that finally knew EXACTLY how she felt. They did day trips and went to the Aquarium and to dinner at Medieval Times for dinner. There were lots of activities she could have participated in if she chose to, but she was uncomfortable. We were reassured many times by the older siblings that this is very normal behavior. It is very understandable for her to be completely overwhelmed by what she was seeing. It may take several conferences for her to feel comfortable with her surroundings. We just want her to be assured that the support is there for her. We know how hard this is for her.

Looking back I wish walking into the conference I could have known that I was going to feel like I found a second family and maybe taken a little more time to relax and enjoy it and take a deep breath. Next year for sure.

“Mom’s Journey,” Continued

30


the BDSRA BOOKSHELF

Children’s Book Selection“Ben’s Flying Flowers” Author: Inger Maier, Ph.D.; Illustrator Maria Bogade

This book selection is for children who are coping with the loss of a brother or sister. It is geared for ages 4-8 years of age. “I’m never drawing happy pictures again.” Day after day Emily draws pictures of dark clouds with rain, and houses with tiny windows and doors. She misses Ben so much. When Emily loses her brother after a long illness, she feels alone, angry, and very, very sad. With the understanding and support of her parents, Emily learns that it helps when she snuggles with her parents. It helps when she talks about her feelings and asks questions about Ben. And it helps when she does regular kid stuff, too. But mostly, she learns that remembering Ben and their happy life together builds healthy and helpful images that soothe her sad feelings and provide much comfort to her and her family. “Flying flowers, flying flowers, white, yellow, or blue. When I see one, I’ll remember the special times I had with you.”

Adult Book Selection“The Neuronal Ceroid Lipofuscinoses (Batten Disease): 78 (Contemporary Neurology Series)” by Sara Mole (Author, Editor), Ruth Williams (Author, Editor), Hans Goebel (Author, Editor)

This book is a medical textbook and can provide detailed information to professionals and caregivers who care for children with Batten disease. New copies are rather expensive ($100 plus) but used copies may be available on Amazon at a substantial savings. Some of our Batten families ask for resources to help educate members of their child’s medical team; this is a good solid resource for doing just that.

Fully updated and revised, this second edition continues to be the definitive volume on this devastating group of disorders. Written by an international collection of authorities in the field, it provides invaluable advice on their diagnosis, patient care, and new treatments that are available.

DONATE TO BDSRA THROUGH THE CFC CAMPAIGN

The fall months bring the official kick-off for the national Combined Federal Campaign (CFC) and many United Way Agency workplace campaigns. Donors to either CFC or United Way can designate their gift or pledge to Batten Disease Support and Research Association to benefit the research and service efforts underway for families with Batten disease.

For federal government employees, postal employees, military families, and state government employees linked to the CFC, making a charitable gift to BDSRA through the CFC is a simple process. In the 2015 Catalog of Caring, the BDSRA charity CFC registration number is 11781. Donors can contribute online or through a paper pledge form and designate their contribution by filling in the 5-digit BDSRA code, which is 11781. Gifts can be made through credit/debit cards, eCheck, cash, check, or payroll deduction.

To determine the CFC regional campaign locations in each state, or to request a pledge card, visit www.opm.gov/cfc/ and click on the link “Donating through CFC.”

Those individuals wishing to direct their workplace giving through the United Way campaign to BDSRA can reach their local United Way agency by the national website www.liveunited.org.

Choose “Find your United Way,” type in a local zip code into the search box, and the website will connect donors to their affiliates in their community. Donors should identify that their gifts through United Way are for BDSRA by writing in the name of the charity on the pledge form. As a 501c3 non-profit, BDSRA is eligible to receive donations through workplace giving programs.

Gifts through affiliated campaigns are a great opportunity to support the mission of research and service and touch the lives of many children and families facing Batten disease.

14 Batten Disease Support and Research Association | 1175 Dublin Road, Columbus, OH 43215 | 800/448-4570

DONOR GIFTS(Gifts given May 16, 2015 through August 31, 2015)

The Batten Disease Support and Research Association has been remembered many times in the past four months by families and friends affected by Batten disease. Thank you for your generous contributions. This support for the vital mission of research and services for families is crucial to finding a cure. We are also grateful to those supporters who have participated in events and volunteered their time to advance our efforts for Batten disease research and family services.

IN HONOR OF:ALL PEOPLE WITH BATTEN DISEASECox Mill High SchoolC. P. Moore

THE ALLIO FAMILY AND NOAH’S RUNMill Valley POA

ANNIE ALLIO Doris Denoto

THE BOWMAN FAMILYAlice Thompson

TIFFANY CORNETTMark Eslahi

CLIFFORD DAHLFriends of the Chatham Library Café

KALEB AND MIA DIAZPatricia Elimon

PEGGY DICAPUAPeggy Crowley

JAXTON ENGSTROMCraig and Patrice EngstromRhonda HayesLisa NoltingRYAN FARETElna Faret-From His Family In NorwayKristina Faret

ROBERT FINKDoris GlatzRon and Lugine HeinRobert and Ruth KruegerMichael and Janine McGovernRobert and Esther NegwerDavid and Linda SenterGary and Gail Voss

LAURY FISCHER AND SUE SCHWEIKShannon Wollack

KELSEY FULLERLauren Mitcham

MACKENZIE GAIRDiana BloodworthKarlie Mymryk

LAYLA GRAHAMJackie Norton

CHARLOTTE GRAYLigia Christensen

CHARLOTTE AND GWENYTH GRAY Carolyn LituchyJesamie Peters

FRANK AND BRIDGETTE HARRISONVanessa Chambers

JESSICA HEINIEBarbara Harris

BRIDGET KENNICOTTMargaret Notebaert

JOSHUA KUPCHUKRachelle Kupchuk

ERIC AND MCKENNA LOWDENLila J. Thome

THE LOWDEN FAMILYJohn and Marjorie Huff

JOHN MANGUMMike and JudyLynn Mangum

JOSEPH MOLDOVERRebecca Moldover

JEFF MONTAVONCharles and Tini Montavon

MATTHEW O’LEARYClark and Lois Woodmansee

JOEY RANKINCincinnati Marathon, Inc. (Flying Pig Marathon)

MASON SMERDELJohn and Karen Terry

LAUREN SURREYMarie T Smith

REX TIMKODanielle BabyakLindsay BaloghDebbie ConwayPatti EstepMegan FerraroJennifer GimilianoAmber HovanecStacey LauxSteph LaFrankieChris LindseyChristie MullTris SchutzeusJanne StewartAshley PirschlRobyn TedescoChris ThomasAutumn TimkoJon Vitullo

IN MEMORY OF:CATIE ALLIO and HONOR OF ANNIE ALLIOJoseph and Kathleen AllioBrent and Dawn BairdRoyce and Karen CunninghamFlavio and Jean GomezPaul and Rose HansellSean and Bridget KellyJohn and Priscilla LimneosMakeup Geek LLCThomas and Margaret McWilliamsDebbera L PainterAlbert and Cheryl RogersThomas and Patricia SchneiderSteve and Denise Visconti

CARL BERGAMDavid and Kimberly AbdoNicholas and Bethany BelisleJeff and Robin BergamKM BinkleyLisa M BoyleMartin and Kathleen BradleyChristopher and Shanna BrasfieldJason and Christy ByleBarry and Kerry ChrismanBryce and Heidi DuskinLinda FunkDaniel and Sabrina GuilliaumeLori Hubbard

THOMAS ANDERSON, son of Mike and Stephanie Anderson, Nevada IA

Born: 8-19-98 | Died: 7-10-15CLN1 (Infantile)

JOSH GUNN, son of David and Karen Gunn, St. John, New Brunswick, Canada

Born: 6-30-99 | Died: 7-4-15 CLN1 (Infantile)

MABEL LARSON, daughter of Ramee Larson, Clinton IL

Born: 7-16-10 | 5-29-15Unknown

MARY MARTHA “EMMY” CERNIGLIA, daughter of Ted and Suellen Cerniglia,

Fruitport MI Born: 10-14-86 | Died 5-16-15

CLN3 (Juvenile)

WILLIAM FORREST BRADDOCK, son of Jason and Braley Braddock, Bryant AR

Born: 5-22-12 | Died: 5-10-15 CLN2 (Late Infantile)

LEAH FITZGERALD, daughter of Donna Fitzgerald, Elgin SC

Born: 6-8-84 | Died: 5-5-15 CLN3 (Juvenile)

COLTON USTRUCK, son of Bill and Melissa Ustruck, West Allis WI

Born: Died: 4-17-15CLN2 (Late Infantile)

in loving memory

REBECCA “BECCA” COLLINS, daughter of Mike and Dawn Collins, Mokena IL

Born: 6-12-99 | Died: 4-14-15CLN1 (Infantile)

KATELYN PAULING, daughter of Jeremy and Kristy Pauling, Montevideo MN

Born: 9-19-06 | Died: 3-20-15CLN2 (Late Infantile)

AMIAYA JONES- CASSIDY, daughter of Tiara Jones- Cassidy, Malvern AR

Born: 7-16-06 | Died: 3-15-15CLN2 (Late Infantile)

MARY PAYTON VIGIL, daughter of Nikki and Joe Vigil, Mandeville LA

Born: 5-28-03 | 2-25-15CLN2 (Late Infantile)

BRITTNI BLANKENSHIP, daughter of Tami Vas, Carpentersville IL

Born: 9-16-90 | 2-2-15CLN3 (Juvenile)

KATIE KEEPING, daughter of Richard and Donna Keeping, Cambridge,

Ontario, Canada Born: 2-15-06 | 1-25-15

CLN2 (Late Infantile)

SETH ALAN LEE DUNFORD, grandson of Crystal Freeman, Nevada OH Born: 9-6-08 | Died: 1-19-15

CLN2 (Late Infantile)

BDSRA takes great care to memorialize those individuals who have passed away

from Batten disease. If a person is omitted from this page, it is because BDSRA was not notified of the death, did not have permission to publish, or did not have

confirmed information.

Receive the latest updates, learn more about Batten disease and find out how to help at www.bdsra.org. 15

Sandy P HunterWayne and Susan KeezerSteven and Sonya KraskiShawn and Carissa LarsonLarry and Sandra LoweSam Nietfeld and Victoria JurgensJohn and Joanne MattsonDanny MilesScott and Rebecca ParkerRussell and Lori StachChristina L. StevensBrett and Lisa WalldenCraig and Lisa Willis

CELIA BETZTim and Jan BetzPam SovikEryn StaatsMike and Mary WendelGary and Judy Williams

WILLIAM BRADDOCKDonald and Rachel AllsupTom and Mary AuBuchonJay and Lori ChancellorDorothy W FraleyTimothy and Sharon GowanMartin and Rebecca JacksonKim Langley Gregory and Elvin SmithRichard and Mary SmithW and Peggy ThomasDean and Kermit ThreetDANIEL BREUERDad

ZICHAELA CAFFEYAmy ShippeeIrving Elks Lodge #2334

CASEN CAMERONDebbie GrossTracy Purcell

HANNAH CAULFIELDDad and Lori

SOPHIA GRACE CRAWFORDMarsha Kidd

BECCA COLLINSJohn, Roselle, Nancy and Katie MonigalJames and Linda Smith

DORIS CRIMMINSDebra M Crimmins

JEAN CRIMMINSBob and Emily AbeleSandra BarringerDick and Mert SullivanPaul Wescott

NICHOLAS DAINIAKOur Promise To Nicholas Foundation

KANE DEGEORGISLinda CrainConnie Christian

KENNETH DOCKTERCarlo and Gertrude AndersenMichael and Joan BarozJoseph and Lucille CampitielloJoseph and Lucille CampitielloFrank and Margaret CannizzaroAnthony and Patricia CasianoMarie CatalanoLinda CavicchioFred ConnellAntonio and Ellen D’EspositoJoseph and Linda DiFrancoAnthony and Virginia DiMaggioGene and Edie (Edith) DockterJohn-Paul and Mariann DuganMaureen FisherRoy FiskaaTina and Gabe FrattaloneRobert and Olga GaetaFrank and Lois GarbariniMichael and Marie GaroneMaureen GavinGeorge and Frances HarrisonSusan IppolitoCornelius and Ellie KeaneStephen and Francine KettyleRoger and Barbara KohlmannMichael and Margaret LapetinaWilliam and Angela LilleyJudith Mannino and Nicole BattinoDiane MasellaAngelo and Elaine MassettiJohn and Betsy McElroyMaria McIndoeEileen McTiernanSandrea MedfordAlbert and Lois MezzanoJohn and Madeline MitchellRalph and Margaret MolinariMartha MorrongielloBrian and Nancy NixonSarah L NolinHans and Rose NybroAntonio and Eileen PalmiottoBarbara PercocoAstrid Petersen and Kari KayVirginia Pitarresi and Rosemarie Casalaspro Joanna and Natale Pizzolo Marion Rissman Michael Rizzo Bill and Marijo Robinson Elaine Rogers Vivian Rorro Jeannie Rowan Joseph and Patricia Rychter

Robert Shapiro Robert and Linda Shapiro Marie Sisti Frank and Camille Spero Stacy and Anna Stockton Lester and Alyce Taylor Elsie Tortore Richard Wesiak James and Margaret Wessels Alan and Katrine Yamarone Richard and Suzie Yamarone

LAURIE, TOMMY AND KENNETH DOCKTERHelen FarleyCarolyn and Francis Gibson

THOMAS DOCKTERDiane Masella

TRAVIS JACK FAIRPaul Hunter and Constance Hunter Charitable Foundation

LEAH FITZGERALDAlan and Judith AlexanderLarry and Lisa BryantDavid and Patricia DolakDonna FitzgeraldJohn and Patricia GrobDavid Johnson and Linda VeldheerJac and Susan MandelJohn and Clyda NealSarah NunnGary and Bonnie Taylor

LEAH AND AMANDA FITZGERALDLula M Camp

SARA GEDEONTomas Gedeon

SHIRLEY GRASSLEYStephen and Bonnie Thompson

COURTNEY GUNTHERMelton and Marilyn Frederick

AUSTIN HEINBetty GreiweCheryl S. Dunham

AUSTIN HEIN and In Honor of ROBERT FINKRobert and Audrey Fink

TY HICKSGroup 33, Inc

COURTNEY JOHNSON Cecil and Tracy Gibson

JULIE KLEEDouglas and Susan Klee

MABEL LARSONRebecca AbramsNicole AdamsTori AlexanderAbby AupperleShannon BrameElaine BrandSarah BrownCaitie BruningCaitie BruningKaren CampbellDoreen CurranHeather DevichRobin DillowJolene EdickBrittney EdwardsAshley FergusonJennifer FritchlHeidi GambleCynthia GirdlerTraci GoldenShalane GriffinAllison HitchingsJody KarrTrudy KarrMelissa KauzlarichLacy LambJessica LeConeyOllie and Kay MandrellLauren MartinKathy MatherlyYanick MathieuJennifer McCabeKirby and Tracie McDonaldSummer McGheeAngie MoranLuisa MorellAshley ParkerCasey PeekJay and Sarah PetersonRachel PettitStephanie PoignantCindy ReddingAshleigh RinkenbergerCorey SchielerRebekah SchreaderAbrian SentelKaren ShoemakerRachelle SpickardSt John’s R. C. CongregationRuth StaufferCarol SturgeonHilary SturgeonLindsay SullivanJulia & Joan The Cookie Dough CafeLori ThrasherLauri TorbertNatalie TottenDonna WeaverMichelle WiesbrookRoger and Susan Wilson

Melissa WoodburyLaura Zarecki

JUSTIN LAVENSandra J Connor

KEVIN LUMMMaugansville Ruritan Club/Kevin Lumm Memorial Fund

BLAKE MASHBURNSheila Tillman

RYAN MAYNARDRory and Jeannine Maynard

LEAH MCFARLANENational Fuel Gas Distribution Corporation

CASIMIR MIKRUTKenneth and Elanore VanSpankeren

TOMMY AND CHET MOUNTMarilyn Sheehan

ASHER NIKOLAJEVSPamela NotleyVera PagrabsAndrew Schaffer

EVELYN NOWICKISusan Robles

DANIEL ORTLANDDave and Joan Ortland

DAVID PETERSONAnn Caldwell

WILLIAM PHELANLinda PhelanMarc and Carol Simons

THOMAS QUIRKNancy Mangum

ASHLYNN RHODESStephen and Bonnie ThompsonJackson Area YMCA

JAMES AND MARK RICKMANCenta Corporation

THOMAS SCHULTZSally L Dechant

KESLEY SHUROSBear Creek Cabins, LLCWarren and Lois Shuros

BROXTON TAYLORFrank and Ann Gennario

EMILY THOMPSONJanet PavlatStephen and Bonnie Thompson-For her birthdayBonnie Jo Thompson-For her birthday

MARY PAYTON VIGILAaron and L Burr

MANUEL VILARETMichael LangJean Galardy

BEN WEMPNERBoosterShauna Whitcomb

DANIEL YANAKColleen Worman

PROGRAMS, SERVICES and RESEARCH:Madilyn ( Mandy) AbernathyJoanne AdamsAmy AlvarezAmerican Endowment FoundationLars and Leilani AndersonJames and Annette AnelloSteven and Anette AngeliniAT&T/United Way/Employee Giving CampaignHeather BandBank Of America Charitable FoundationLindsay BarnettKira BartonBDSRA Canada ChapterMichelle BergBioMarin Pharmaceutical Inc.Bekah BowmanInc BP FoundationJames and Judith BreenJoe BrettlerBristol-Myers Squibb FoundationPatricia BristoweDiane BrosekKate BrownKurt BrunoBob and Barb CaugheyCFC Of North Puget SoundCFC United Way Of Central Ohio Dorna ChuEd and Lynnette ColbyHermalia ColinMike and Dawn CollinsTimothy and Kristin Coon Kristin CoonJon CooperThomas CornwellSusan Cotman


Jill CotterCarolyn M CovielloLinda CrainJacob and Jaime CrawfordDennis and Carolyn DahlDavid and Corrina DahlChristopher and Heather DainiakNicole Darling Marjorie Frazier Dave LippertJane DayeKate DelaneyMaryann DibJarrod and Jessica DickenJennifer DilleySara DonnayRoger DonnayKerry DoranJean DurchJodi ErbEric and Lisa FaretAlex FarnausNorbert and Jacqueline FarnausAnna FaynNicole FiamengoDonna FogleScott and Tara GairAlyssa GarnerGE United Way CampaignZuzana GedeonRob and Chris GeerFrazer and Dana GieselmannGlobal ImpactRichard and Katherine GodfreyJill GonzalezBernard and Selma GoodmanGrainger Matching Charitable Gifts ProgramKaren GreenLora GreenawaltDoug and Bettye HaleSusan A HamiltonAlexandria HarrellRonnie and Pearl HarrisonAnna HebertAmanda HecklerRon and Lugine HeinJohn and Becky HettebergJack and Stacey HiltmanHoneywell International Charity MatchingDaniel and Nancy HynieJohn IrelandArletha JamesCharlene JasperRobert and Karen Jensen(DBA Sky Zone) Jump Brothers, LLCJohn and Tina HeuchanJames and Denise JohnsonLance W. JohnstonConnie JohnstonKarbeck Jump Co., LLCSteve and Anna KellerDavid and Sara KennicottMelissa Kidd

Marsha KiddWayne and Trina KieferChad and Kim KillenMelissa KingMary Beth KiserPatricia KonetMindy KostromskoyKroger - Community RewardLakeland Regional High SchoolRamee LarsonJan LatvisSue LawrenceCharles and Wanda LefflerChad and Shannon LeisThomas LesterErica MackoulMallinckrodt Pharmaceuticals Matching Gift ProgramNancy MangumMike and JudyLynn MangumKody MaynardSharon Mattison Karen McCaffreyLawrence and Barbara McDonoughMcGladrey LLPWillie and Tracee McKinleyMary Ellen and Edward Mendes-MonizMerck FoundationMetro NY/NJ Chapter BDSRAMidwest Chapter BDSRAMile High United WayMarisa MillerMarcia MillerBojana MirosavljevicJames and Valerie MobleyJohn MockCharles and Tini MontavonDan MooreChristina MoraDiana NikciNoah’s Hope - Hope 4 Bridget FoundationOhio Chapter BDSRAMichelle O’LearyOnehope FoundationBrian O’NeillCharles O’NeillJoseph and Cheryl OnestoDave and Joan OrtlandRobert PalivodaNancy PapaliaKelly ParkPartners Health CarePartnership for Cures DBA Hope 4 BridgetPartnership For Cures DBA Noah’s HopeAllen and Cindy PateJeremy and Kristy PaulingMichelle PawlowskiGordon PearlmanLori PeickertPeggy PereiraCaroline PetraitisPatrick and Therese Pfaller

PfizerAmy PhillipsChristine PullenDenia RamirezShawna RhodesRuth M RichardsonRiverview Baptist ChurchJeannie RowanSanofi Foundation Of North AmericaMarie SchimmelTrina SchukarCarl and Vikki SchwartzeSempra Employee Giving NetworkNicole ShapiroShop For Your CauseNeha SinghKanak SinghJames and Linda SmithMike SmithAmy SnyderSoutheast Chapter BDSRAKelly StaufferKristy Taylor The City RebarThe Giving Campaign AllstateSara C ThompsonBonnie Jo ThompsonThomson Reuters: My Community ProgramThrivent Choice (MO)Sheila TillmanAutumn TimkoBonnie TinkerUnited Seating & Mobility LLC Dba NumotionUnited Way California Capital RegionUnited Way Of Greater Philadelphia and SNJTracy and Jennifer VanHoutanJerry and Susan VanHoutanRonald VegaJoseph and Nikki VigilKevin WatermanNatalie WatkinsWendy WeaverWells Fargo Community Support CampaignMichelle WheelerAaron and Rebecca WhitingRobert and Laura WilhelmJoanne Willer Thomas WishartBarbara A YoungMark and Christine ZachariaTodd and Kimberly Zellmer

Donations from these events were made to BDSRAthrough August 31, 2015: 5K Run WalkIn honor of Kate Benroth

12th Annual Kevin’s Fund Golf TournamentIn memory of Kevin Lumm

Batten Awareness Weekend Makeup Geek Caitlin Rose Sale In memory of Caitlin Allio

Chili Cook OffIn memory of Zichaela Caffey

Cox Mill High School FundraiserIn honor of Brandon Hawkins

Kick Batten’s for CarlIn memory of Carl Bergam

T-Shirt SaleIn memory of Ben Wempner

Westley’s Wish Run for Batten Disease In honor of Westley McKinley Approximately $93,000 was donated to BDSRA for research and services.

Please direct any questions or concerns regarding this list to Noreen Murphy at [email protected] or (800) 448-4570, ext. 14. Thank you for your continued support.


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