Dystonia is a Journey
2018 ANNUAL REPORT
Sam and Fran Belzberg founded the DMRF in 1976. The Foundation has since transformed the field of dystonia research and the resources available to affected individuals and families.
Dystonia is more than a diagnosis in a medical record. It is a life-changingjourney, not only for those affected but for the entire family. Your support of the Dystonia Medical Research Foundation (DMRF) ensures that no onehas to face this journey alone. For nearly 45 years, DMRF has supportedpeople through the dystonia experience while advocating on their behalfand stimulating medical research to improve lives.
The DMRF’s mission to cure dystonia is also a journey. The organization has evolved dramatically since its founding in 1976. The promise to find acure has not wavered, and we continue to transcend the many obstaclesbetween our vision and the cure, including limitations in funding and the in-
herent unpredictability of science. The re-markable expansion of dystonia
research and flow of medical advancements prove our
approach is working, and we continue to be inspiredby the constant progress.
We suffered a difficult loss in 2018 with the death of Co-Founder and Chairman Samuel Belzberg. His wise guidance and tenacious enthusiasmfor pursuing our mission are sorely missed. Yet his legacy continues. Thestrength of the DMRF and the undeniable impact the Foundation has had on dystonia research and patient resources is a testament to Sam’s visionand the unconditional commitment he and Frances Belzberg made to thedystonia community. We are grateful Fran agreed to step into the role ofHonorary Chair, and the Board of Directors is as determined as ever to fulfill the promise of a cure.
Our progress in 2018 simply would not be possible without your support.Every accomplishment highlighted in this report was possible because ofyou. Thank you for being a part of the DMRF’s global effort to find a cure.
Sincerely,
Message from leadership
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Art Kessler Janet L. President Executive Director
The mission of the Dystonia Medical Research Foundation (DMRF) is to advance research for more effectivetreatments and ultimately a cure, to promote awareness and education, and to support the well-being of affected individuals and families.
Dystonia is a neurological disorder that causes excessive, involuntary muscle contractions. These involuntarycontractions force the body and limbs into abnormal movements and awkward postures. Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, andchildren of all ages and backgrounds. Estimates suggest no fewer than 250,000 people in the United States are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. Although treatments exist, dystoniaremains a chronic disorder for which there is not yet a cure.
Mission
About dystonia
Each of the 20+ members of the DMRF Board of Directors is personally affected by dystonia, either diagnosed
themselves or a loved one is diagnosed.
Sam’s impact on dystoniaresearch and those affectedby it was immeasurable. He literally kick-started thefield of dystonia research.Through his determinationto unravel this mystery, heinspired countless others totackle it. Like so many of us,Sam never accepted defeatto dystonia. Our dystoniafamily lost a great crusader,but his legacy will live onand we won’t let him down.—Art Kessler, DMRF President, on the passing of Co-Founder &Chairman Samuel Belzberg
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Neuroanatomical Substrates for DisruptedeIF2alpha Signaling in Dystonia Nicole Calakos, MD, PhDDuke University (USA)
Myoclonus-Dystonia, a Study of Motor and Non-Motor Symptoms: Is there a Role for Serotonin?Marina A.J. de Koning-Tijssen, MD, PhDUniversity of Groningen (The Netherlands)Supported by the Brown Family Foundation
Machine Learning Guided Deep Brain Stimulation to Cure Neurological DiseaseJesse Goldberg, MD, PhDCornell University (USA)Supported by the Dorothy Feiss Scientificand Medical Research Fund
Striatal Neuron Activity Patterns in DystoniaEllen Hess, PhD Emory University (USA)
Tremor, Oscillations, Synaptic Plasticity, and DBS for Dystonia William Hutchison, PhDToronto Western Hospital (Canada)Supported by Dystonia Medical Research Foundation Canada
Determining the Role of Torsin in Nuclear Pore Complex Assembly Patrick Lusk, PhD, Yale University (USA)Supported in part by Dystonia Medical Research Foundation Canada
Synaptic Plasticity in a Mouse Model of Paroxysmal Dystonia Alexandra Nelson, MD, PhDUniversity of California, San Francisco (USA)
An International Study to Investigate the Non-Motor and Psychological Impact of Myoclonus-DystoniaKathryn Peall, MDCardiff University (United Kingdom)Supported by the Brown Family Foundation
Making great strides for d ystonia research
15 DYSTONIA RESEARCH INVESTIGATIONS ADVANCED CUTTING EDGE SCIENTIFIC WORK.Since 1976, DMRF has funded hundreds of research investigations, each one an investment in expanding the dystonia field and pushing closer to a cure. In 2018, DMRF-funded investigators pursued bold new treatment strategies,explored dystonia brain chemistry, examined non-motor aspects of dystonia,and embarked on clinical studies to improve diagnosis and treatment.
Investigation of Striato-Pallidal Connections in a Mouse Model of DYT1 Dystonia Giuseppe Sciamanna, PhDUniversity of Rome tor Vergata (Italy)
Integrative Network and its ProprioceptiveModulation to Probe Physiology and Therapyof Cervical DystoniaAasef Shaikh, MD, PhDCase Western Reserve University (USA)Supported by the Estate of Jocelyn Baker
Dystonia-associated Endoplasmic Reticulum Defects and the (De)regulation of Neurotransmission Patrik Verstreken, PhD VIB Leuven (Belgium)
Three-Dimensional Network Architecture of DystoniaAn Vo, PhDThe Feinstein Institute for Medical Research (USA)
Identification of Neuronal Mechanisms ofAgency in Myoclonus-DystoniaYulia Worbe, MD, PhDPitié-Salpêtrière Hospital (France)Supported by the Brown Family Foundation
James C. Kilik Memorial Research AwardsModulating the Functional Connectivity of the Cerebellum in Musician’s Dystonia Robert Chen, MD, PhDToronto Western Hospital
A Study to Identify Kinematic and Force Measures Capturing Impairment in Musician’s Dystonia among String Players and Improvement with Retraining Therapy Christine Kim, MDColumbia University
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Dystonia is one of the network disorders, and I’m trying to understandhow different nodes of the networktalk to each other and how we canmodulate the network in a counter-intuitive way. If something is broken, we don’t focus on what is broken. We make up for what is broken withsomething that is working.—Aasef Shaikh, MD, PhD, DMRF Grant Recipient & Past Clinical Fellow
4 YOUNG DYSTONIA INVESTIGATORS RECEIVED RESEARCH FELLOWSHIPS.
Mahlon DeLong Young Investigator Award recipient Aloysius Domingo, MD wasinvited to present at the annual Medical & Scientific Advisory Council meeting.Pictured with MSAC Member Kristina Simonyan, MD, PhD, Dr. med.
Role of the X-linked Dystonia Parkinsonism(XDP) Causative Gene TAF1 in the StriatalDevelopment and MaintenanceMaria Daniela Cirnaru, PhDMount Sinai Beth Israel (USA)Mentor: Michelle Ehrlich, MD
Barbara Oliver Memorial Dystonia Research Award Using the Nematode Caenorhabditis elegans to Identify Candidate Substratesfor OOC-5/TorsinAGabriela Huelgas-Morales, PhD University of MinnesotaMentor: David Greenstein, PhD
CRISPR/Cas9 System Targeting Specific DYT1Allele Mutation in Patient Induced PluripotentStem Cells (iPSCs): A Strategy for PhenotypeReversion in iPSCs-Derived NeuronsLilian Cruz, PhDMassachusetts General Hospital (USA)Mentors: Xandra Breakefield, PhD & Cris Bragg, PhD
A Genetic Approach towards IdentifyingTorsin Function in Relation to DYT1 DystoniaAnthony Rampello, PhD, Yale UniversityMentor: Christian Schlieker, PhDSupported by the family of Barbara and Ron Oliver.
Dystonia research requires a constantflow of new people and new ideas.DMRF provides funding opportunities for young investigators, at strategicstages in a research career, designed to help foster the next generation of dystonia innovators.
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A NEW SECTION OF THE DMRF WEBSITE CENTRALIZED RESOURCES FOR INVESTIGATORS.
DMRF LEADERSHIP MET WITH NINDS TO IDENTIFYOPPORTUNITIES FOR DYSTONIA RESEARCH.
“Defining Emergent Opportunitiesin Dystonia Research” was the title of a meeting organized by
the National Institute of Neurological Disorders & Stroke (NINDS),October 29–30, 2018, in Bethesda, Maryland. The meeting convened world renowned dystonia experts and brought increasedvisibility of dystonia to a critical federal medical research agency. Director of NINDS, Walter J. Koroshetz, MD, opened the meetingwhich was co-chaired by Laurie Ozelius, PhD of Harvard MedicalSchool and David G. Standaert, MD, PhD of University of Alabama at Birmingham. DMRF Chief Scientific Advisor Jan Teller, MA, PhDwas among the presenters.
The program agenda included a detailed review of advancements in dystonia research and discussion of future research priorities.
The DMRF’s support of dystonia investigators is beyond financial. The DMRF also prioritizes curatingtools and resources to help dystonia investigators dotheir important work. A new section on the DMRFwebsite added in 2018 includes links to informationabout animal models, cell lines, biosamples, and additional resources.
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Evaluation by a movement disorder specialistcan have a dramatic impact on quickening dystonia diagnosis time, increasing treatmentoptions, and maximizing outcomes from treatment.Many patients throughout the country musttravel significant distance and/or endure longwaits for appointment openings to access aphysician with the necessary qualifications to diagnose and treat dystonia. In response to theneed for additional clinical experts, the DMRFsponsors one-year clinical fellowships to trainsecond-year fellow physicians in the diagnosisand treatment of movement disorders with special competence in dystonia. The outstandingclinicians who complete training have joinedmovement disorder programs at prestigious institutions and begun practicing in communitiespreviously without a dystonia expert.
The Clinical Fellowship Program was funded by grants from the Allergan Foundation andMerz Pharmaceuticals.
5 CLINICAL FELLOWS RECEIVED EXPERT TRAINING TO QUICKEN DYSTONIA DIAGNOSIS AND TREATMENT.CLINICAL FELLOWS AND MENTORS ACTIVE IN 2018 INCLUDED:
• Noreen Bukhari-Parlakturk, MD, PhD – Duke University (2018–2019)Mentor: Nicole Calakos, MD, PhDResearch: Using transcranial magnetic stimulation (TMS) in patients with writer’s cramp (focal handdystonia) to reduce dystonic movements.
• Avram Fraint, MD – Rush University Medical Center (2017–2018)Mentor: Cynthia Comella, MDResearch: Feasibility, reliability, and satisfaction of post-botulinum toxin injection telemedicine assessment in patients with cervical dystonia.
• Christopher Groth, MD – University of Colorado Denver (2017–2018)Mentor: Brian Berman, MD, MSResearch: Exploring possible correlation between reduced GABA receptor availability in global pallidus and susceptibility to developing cervical dystonia.
• Shabbir Merchant, MD – National Institute of Neurological Disorders & Stroke (2017–2018)Mentor: Mark Hallett, MDResearch: Investigating frequency of anxiety and depression in dopa-responsive dystonia.
• Lindsey Neimand – Icahn School of Medicine at Mount Sinai (2017–2018)Mentor: Rachel Saunders-Pullman, MD, MPH, MSResearch: Exploring differences in the pathophysiology of dystonia associated with complexregional pain syndrome compared to organic focal hand dystonia.
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INVESTIGATORS HAD ACCESS TO DATA AND SAMPLES FOR NEW STUDIES.The Global Dystonia Registry is a community-based research initiative that depends on the DMRF for operational and administrative manage-ment. The Global Dystonia Registry supports future dystonia studies, including clinical and research trials,through the voluntary collection of patient data. To date, more than 5,300 individuals have joined.
The Dystonia Brain Collective is another DMRF-led collaborative effort among participatingdystonia organizations. The purpose is to promote brain donation registration in support of research and provide investigators with access to tissue samples. Three brains were successfully recovered in 2018. DMRF is deeply grateful to the donors’ families for facilitatingthese invaluable contributions to research.
I was fortunate to find amovement disorder specialistthrough DMRF. Thank you so much. If it wasn’t for theFoundation I would be stuck using a pain clinic with verylittle knowledge of dystonia.—Jason Padden, DMRF Supporter
Drs. Christian Schlieker, David Peterson,and Roy Sillitoe were among the guest
presenters at the 2018 Medical & Scientific Advisory Council meeting.
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EXPERTS FROM ACROSS THE GLOBE GATHERED FOR SCIENTIFIC MEETINGS.With support from the Brown Family Foundation, the 4th DMRF Myoclonus-Dystonia Workshop took place September 27–28, 2018 in Paris. The meetingwas chaired by Marina de Koning-Tijssen, MD, PhD of University Medical Center Groningen (The Netherlands) and Marie Vidailhet, MD, PhD ofSalpêtrière Hospital (France). An international cohort of experts presented the latest myoclonus-dystonia research and brainstormed next steps to accelerate research progress.
DMRF organized a workshop entitled “Targeted Drug Discovery for Dystonia,”November 8-9, 2019 in Chicago. Meeting participants included seasoned dystonia investigators and non-dystonia experts experienced in protein-baseddrug discovery. The workshop was co-chaired by Christian Schlieker, PhD ofYale School of Medicine and Thomas Schwartz, PhD of Massachusetts Instituteof Technology. The goal of the meeting was to summarize and discuss recentefforts to identify drug targets for dystonia.
The Joan Miller Young Investigator Scholarship Award supported up-and-coming dystonia researchers by providing travel stipends to attend DMRFworkshops and meetings. Participation in these workshops and meetings is particularly important for young researchers because they provide opportunities to present their work to expert audiences and develop useful connections with thought-leaders in the field.
Research grants awarded by the Foundation alongwith its dedication to raising public awareness makeme truly hopeful that finding a cure for all forms ofdystonia is possible.—Ed Gewirtz, DMRF Supporter
THE DYSTONIA COALITION RECEIVED FREE STAFF AND ADMINISTRATIVE SUPPORT.
The Dystonia Coalition is a collaboration of medical researchers and patient
advocacy groups supported by the Office of Rare Diseases Research in the National Center for Advancing Translational Sciences and The National Institute of Neurological Disorders & Stroke (NINDS) at the National Institutes of Health (NIH). The mission is to advance the pace of clinical and translationalresearch in the dystonias to find better treatments and a cure.The objectives are to develop a fuller understanding of themany features of dystonia and how they change over time, to develop validated diagnostic strategies and rating tools fordiagnosis and monitoring patients in clinical trials, to establish a biorepository where blood and other samples can be storedand distributed for research, to stimulate clinical trials for newtreatments, and to promote education and awareness. TheDMRF plays an integral role by providing free logistical andplanning support for the Coalition as an administrative center,for example managing payments to clinical sites and supportingthe renewal grant to the NIH. This has saved the Dystonia Coalition $1.5 million in indirect costs, maximizing funds invested in research.
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Increasing awareness & advocacyTHE DYSTONIA ADVOCACY NETWORK MADE 150 VISITS TO MEMBERS OF CONGRESS TO EDUCATE THEM ABOUT DYSTONIA.On March 19–20, 2018, the Dystonia Advocacy Network (DAN) hosted Advocacy Day in Washington, DC to encourage Members of Congress to support the DAN’s legislative priorities. Advocates asked that dystonia continue to be recognized asa condition eligible for study through the Department of Defense Congressionally Directed Medical Research Programs and toprovide the National Institutes of Health with ample funds for the 2019 fiscal year. The DAN also collaborated with like-mindedorganizations to ensure pre-existing condition protections are not eliminated from federal healthcare policies. The DMRFcontinued to provide staff support in 2018 to ensure the DAN implemented and achieved the legislative agenda.
The Douglas Kramer Young Advocate Award recognizes young peoplewho are giving voice to dystonia through advocacy. Recipients in 2018were Rachael Mathews, Sophia Taylor, and Melissa Rentfrow. Specialthanks to the Kramer Family for generously supporting this award.
The time I spent with the Dystonia AdvocacyNetwork was a tremendous turning point forme. Being with other people who had beenthrough similar experiences made me feellike I wasn’t alone anymore.”—Mike Cahall, DMRF Supporter & DAN Advocate
DYSTONIA WAS INCLUDED IN THE DOD CONGRESSIONALLY DIRECTEDMEDICAL RESEARCH PROGRAMS.Since 2010, the Department of Defense (DOD) has funded dystonia research because volunteer advocates push every year to make sure dystonia is included in its CongressionallyDirected Medical Research Programs (CDMRP). Unlike the National Institutes of Health andother federal medical research initiatives, the CDMRP only funds research into conditions that are deemed eligible for study by Congress. The eligible conditions list is renewed by Congress every year. The hard work of dystonia advocates on this issue has resulted in $14 million from the DOD awarded to outstanding dystonia investigators. The DOD integrates patients and family members into the CDMRP scientific review process by assigning consumer reviewers to participate alongside research experts. The DMRF is invited each year to nominate members of the dystonia community for these important positions.
DAN advocates presented Senator Susan Collinswith a Distinguished Public Service Award to
recognize her support of the dystonia community.
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TEAM DMRF RAISED AWARENESS AT THE TCS NYC MARATHON.In honor of those struggling with dystonia, Team DMRF has competed in the world famous TCS New York CityMarathon since 2013, literally running for those who can’t. In 2018, Team DMRF included Amy Amendola,Heather Barskaya, Ginny Bryan, Jaime Dimitri, Larry Dubill, Stephen Gebeloff, Jim Metherell, Marissa Rozenfeld,Carrie Siu Butt, and Carole Tordi. Dozens of supporters gathered on the sidelines to cheer them on.
I would never run for any organization except for theDMRF. The research they fund changes lives, includingmine and my sister’s. This organization changed my life!Carrie Siu Butt, Team DMRF, TCS NYC Marathon
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Empowering patients with information & support
50+ SUPPORT GROUPS AND MODERATED ONLINE FORUMS REDUCED ISOLATION AND INCREASED SOCIAL CONNECTION.Feelings of isolation are common among individuals and families impacted by dystonia, and can bedevastating to physical and emotional health. Social connection and peer support are vital to livingwell with dystonia. DMRF support groups provide local peer support, offering the opportunity to gatherwith others who know the challenges of living with dystonia. Online forums provide connection tothousands around the country, and around the world. The DMRF volunteer network is also made upof individuals devoted to awareness, fundraising, and/or serving as area contacts.
Support groups provide a space for those of us with dystonia to share our stories andstruggles in a safe and accepting environment. We feel less alone and more understood.We become better informed about our treatment choices and walk away with usefulinformation to support us in our journey with dystonia.—Alli Feeley, Founder & Leader of Greater Chicagoland Dystonia Support Group
50,000+ PEOPLE RECEIVED
INFORMATION & RESOURCES.
The DMRF is here for you when dystonia turns life upside down.
Every member of the DMRF’s Board of Directors is navigating the dystoniajourney, either themselves or beside a loved one. We are reminded every
day of the urgency of our work because we see and feel the impact
of dystonia in our own lives. We are all on this journey together.
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The Central Indiana Dystonia Support Group held its first meeting in 2018.
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DMRF PROVIDED THOUSANDS OF FREE EDUCATIONAL MATERIALS TO PEOPLE SEEKING INFORMATION, RESOURCES, AND REASSURANCE.Access to accurate information aboutdystonia and treatment options is as vitalto living well as access to appropriatemedical care. Sharing a brochure aboutdystonia can be a simple but powerful act to inform family members, educators,colleagues, and even strangers about thedisorder and promote greater awareness.More than 25 brochures and pamphlets areavailable for free mail order or downloadfrom the DMRF website. These materials are also distributed through local dystoniasupport groups, educational meetings, awareness events, and in medical offices.
8 EDUCATIONAL MEETINGS PROVIDED THE LATEST INFORMATION FROM TOP EXPERTS. Hurried medical appointments in which physicians have limited time with patients are not a conducive space for in-depth learningabout dystonia and the latest clinical advancements. DMRF creates
opportunities for individuals to interact with expert cliniciansand researchers in an educational setting, with ample time for interactive discussion.DMRF provided thousands of people with thelatest information on living well with dystonia by organizing free educational meeting acrossthe country. These meetings also provideopportunities for peer support and socialconnection. Locations included: Albuquerque,Boston, Chicago, Cleveland, Gig Harbor (Washington), Los Angeles, Phoenix, and St Louis. Allergan provided a generous educational grant in support of the meetings.
findingsupport
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20+ community eventsPATIENTS, FAMILIES, AND HEALTHCARE INSTITUTIONSUNITED IN THE MISSION TO FIND A CURE.The DMRF partners with volunteers and support groups around the country on creative and fun events that unite the local dystonia community, promoteawareness, highlight movement disorder programs, and raise urgentlyneeded funds for research.
Among DMRF’s most popular community programs are Dystonia Zoo Walks, family-friendly events to raise awareness and support DMRF. Thirteen Zoo Walks attracted more than 5,000 participants in 2018. Locations included: Bronx/New York City, Detroit, Cleveland, Cincinnati, Fresno, Philadelphia, Phoenix, Pittsburgh, Portland (Oregon), Providence (Rhode Island), St Louis, San Diego, and Twin Cities.
(L to R) Allison Hersh London and June Hersh led “Ali's Zoo-Gooders” at theBronx Zoo Walk. US Congressman Dwight Evans is pictured with organizers of the Philadelphia Zoo Walk. Team BillyMac participated at the Twin Cities Zoo Walk. Scotty Tritley made a new friend in St. Louis. The Young Family traveled to Cleveland to support Karen Flanagan and her event. Ed Cwalinski and MaryRae Nee were recognized at the Pittsburgh Zoo Walk. Mary Stone lead team “Rolling Stones” in Phoenix. The Baron Family is pictured at the Providence Zoo Walk.
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Clinical Fellowship Program CommitteeSusan Bressman, MD, Mount Sinai Beth IsraelCynthia Comella, MD, Rush University Medical CenterMahlon R. DeLong, MD, Emory University School of MedicineStanley Fahn, MD, Columbia University Medical CenterHubert Fernandez, MD, Cleveland Clinic Mark Hallett, MD, National Institute of Neurological Disorders & StrokeJoseph Jankovic, MD, Baylor College of Medicine
Dystonia Dialogue Editorial BoardBarbara Kessler, Chair Ed Cwalinski Paul Kavanaugh Dee Linde Diane Rudolph Paula Schneider Elizabeth Schultz Todd Spotti
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DMRF distributed 110,000+ copies of the Dystonia Dialogue newsletter.
Board of DirectorsSamuel Belzberg(1928–2018) Co-FounderFrances BelzbergHonorary Chairperson & Co-FounderStanley Fahn, MDLifetime Honorary DirectorArt KesslerPresidentRichard A. Lewis, MDVice President of ScienceBarbara KesslerVice President of Awareness & EducationKaren K. Ross, PhDVice President of SupportRosalie LewisVice President of Public PolicyDennis KesslerVice President of DevelopmentSandra Weil, Network LiaisonMark Rudolph, Treasurer
Jon Davis, DirectorJohn Downey, DirectorDonna Driscoll, DirectorNancy Harris, DirectorMarilynne Herbert, DirectorRonald Hersh, DirectorErwin Jackson, PhD, DirectorStefanie Jackson, DirectorCarole Rawson, DirectorLiz Rawson, DirectorDiane Rudolph, DirectorPaula Schneider, DirectorPamela Sloate, JD, DirectorMahlon R. DeLong, MDScientific Director, ex officioBilly McLaughlinAwareness Ambassador, ex officioJanet HieshetterExecutive Director, ex officio
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Medical & Scientific Advisory Council
Community Leadership CouncilGinny Bryan Beth S. FarberKaren A. Flanagan James A. MetherellMelissa Phelps Rosemary Young
Mahlon R. DeLong, MDScientific Director Emory UniversitySchool of MedicineJesse Goldberg, MD, PhDCornell UniversityMark Hallett, MDNational Institute of Neurological Disorders & StrokeCharles Harata, MD, PhDUniversity of IowaJill Ostrem, MDUniversity of California, San FranciscoCoro Paisán-Ruiz, PhDIcahn School of Medicine at Mount SinaiAlvaro Pascual-Leone, MD, PhDHarvard Medical SchoolJoel Perlmutter, MDWashington University School of Medicine in St Louis
Christian Schlieker, PhDYale UniversityThomas Schwartz, PhDMassachusetts Institute of TechnologyKristina Simonyan, MD, PhDHarvard Medical SchoolYoland Smith, PhDEmory UniversityPeter Strick, PhDUniversity of PittsburghCynthia Comella, MD - ex officioRush University Medical Center/Dystonia Study GroupH.A. Jinnah, MD, PhD - ex officioPrincipal Investigator, Dystonia CoalitionBeth-Anne Sieber, PhDFederal Liaison
The DMRF has been a wonderfulcommunity of families who havewalked the path. We followed thosewho went before us, and now thereare people following us. We pay itforward through the DMRF.—Diane Rudolph, DMRF Board of Directors
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Statement of Activities
A complete copy of financial statements audited by Barnes, Givens & Barnes, Ltd. is available upon request from the Dystonia Medical Research Foundation, One E. Wacker Drive, Suite 1730, Chicago, Illinois 60601.
DYSTONIA MEDICAL RESEARCH FOUNDATION | YEAR ENDING DECEMBER 31, 2018
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Statement of Financial Position DYSTONIA MEDICAL RESEARCH FOUNDATION | YEAR ENDING DECEMBER 31, 2018
LIABILITIES
SPECIAL EvENTS
20%
MEMBERSHIP & SUPPORT 7%
ADvOCACY 5%
ADMINISTRATION 6%
DONATIONS & GRANTS 80%
REVENUES
SCIENCE 56%
AWARENESS& EDUCATION
15%
FUNDRAISING 11%
EXPENSES
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Raymond AdolfsonWanda AhlquistEmma and Donald
AjlonyLouis Amato, Sr.Robert AmerioJohn F. AndersonSuzanne ArnoldHarriet BallBasya Rochel Bas Shmuel Hirsh obm
Eileen BeanDavid BelskySamuel BelzbergRomeo BernardErnest BersamiBessie BetzelosMyrna BillianLeo E. BoisvertLaurel A. BradleyShirley BraimanMichael BregliaWillie Robert BrownBeverly BrownsteinCheryl BrunnerJames R. BulmerKaren Burke
Eroull ButerbaughRay CahillDavid CampMelissa Ann CentrellaJoy ChristensenDr. Larry O. ChristianRoy ConacherRose ConroyJanene Conte-ClarkJoanna CraigStanley CrosbyDavid Cullinane Marie D’AmoreRita DeCostaA. J. DeGuioEulinia “Nini”
Del RosarioDonald DomeThomas DriscollRobert DufaultEd DyeLorraine EganWilliam EleyKeith EmersonHarriett FarberShari Farber-TrittTommy Ford
Pat FrostIrene GalassiShirley and Harry Goldberg
Dr. George GoldmanHoward GolubRobert GoodmanJohn Jessee GossettJoyce GreenbergJerry GronerAlfred GrutmanRobert HaidEllen HansenGeorga Harrington
HenrichsonBernard HarrisChristopher HarrisHarold HaslachCrawford HawkinsGloria HeisdorfMary Ann HohensteinJane Holland SmithJames KazmaierJames C. KilikMiriam KimmelmanPeter KlassenMary Kolls
Stephanie KopecFlorence KramerRichard KuninHarry LaCountMelvin LaphamPeter LaresBeverly LazerwitzSteven LesperanceDorris MartinWilliam Dale “WD”
McKeandBeverly MellonStanley MeltzerJoann MillerMaggy MillerGene MinervaStephanie MontemurroDaniel NewmahrEdna NewmanMary O’BrienBarbara OliverLaurie Ornstein AvonaSusan OwensEsther Paik-GoodhartNettie PancikJanet ParentAleksandra Passarello
Pamela Rowe PeabodyBrent PetriMichelle PhelanRichard PollackRajiv PurohitAnthony “Tony” PutzSylvia RadovRosalyn ReeseJoann RichardsonAnnie RitschRoberta RosenbaumLena RossatiSy RubakJeanne RudolphMaria A. SalasJudy and Jerry SchwartzShirley SchwartzGertrude ShaferCheryl SheldonSidney SherrinJames Jacob Showers Sr.Matthew SimmonsAnita Gail SimonDavid SingerBruce SlepianSam SlepianSophia Stanich
Leona SternRobert StoverJeanette StremelDick StuartStephen K. SveridJohn SymondsVincent TabbachinoAnn and Larry TeuscherSylvia ThallNorma Jean ThomasOwen ThompsonWillard “Tommy” Thompson
Virginia ThrowerEdwin “ET” TorresJoann TurnerConnie WalterCharlotte WeaverSusan Pitts (Weiss)Ida Larine WilliamsJames L. WilliamsGeorge Winston GilpinAllan WomacJoann Wyeth
In memoriam THE DMRF WISHES TO ACKNOWLEDGE THE GENEROUS GIFTS RECEIVED IN MEMORY OF THE FOLLOWING:
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Thank you 2018 donors$50,000 or MoreAllergan CorporationAllergan FoundationFrances and Samuel BelzbergWendy Bloom and
Arthur KesslerBrown Family FoundationCure Dystonia NowDystonia Medical Research
Foundation CanadaDystonia Study Group/Rush
University Medical CenterFamily Alliance FoundationJune and Ron HershBarbara and Dennis KesslerRosalie and Richard Lewis, MDMerz North America, Inc.Janet NastRonald Oliver/Barbara Oliver Memorial Research Fund
C. Northrop and A. Marder Pond Foundation
Pamela Sloate/Bronx DystoniaZoo Walk
Team Ali’s ZooGooders/Bronx Dystonia Zoo Walk
Sandra Weil
$25,000 to $49,999AnonymousPeter Briglia/Joan Miller Young
Investigator Award Jonathan DavisDMRF Phoenix, AZ Dystonia Support Group/Phoenix Dystonia Zoo Day
DMRF Western PA Dystonia Support Group/Pittsburgh Dystonia Zoo Walk
Dystonia Support & Action Group of Greater Philadelphia/Southeast Pennsylvania Support Group/Philadelphia Dystonia Zoo Walk
Flanagan Family/Cleveland Dystonia Zoo Walk
Stefanie and Erwin Jackson, PhDCarole and Doug RawsonRevance Therapeutics Inc.David M. Rudolph
Research FundUS WorldMeds, LLC
$10,000 to $24,999AnonymousBaron Family/Patricia Bono/
Beth Paolero/Steve Sowka/ Paula Schneider/Providence Dystonia Zoo Walk
Chelsi Christman/Sarah Ernstberger/Sunshine Fox/Hunt for a Cure
Mike Delise/$5Cure4DystoniaJaime Dimitri/Dystance4Dystonia
DMRF Central California Dystonia Support Group/Fresno Dystonia Zoo Walk
DMRF Minnesota Dystonia Support Group/Twin Cities Dystonia Zoo Walk
Farber Family/Basket BashIpsen Biopharmaceuticals, IncEstate of Catherine Theresa KirkDee Linde/Portland
Dystonia Zoo WalkJames Metherell/
Dystance4Dystonia/Toss for Dystonia
Martha Murphy/San Diego Dystonia Zoo Day
Ruth NussdorfThomas OgdenMelissa and Roger Phelps/
Cincinnati Dystonia Zoo WalkKaren Ross, PhD/Symonds Foundation
Diane and Mark RudolphCharles and M.R. Shapiro
Foundation, Inc.Team Flanagan/Cleveland
Dystonia Zoo WalkJune Tritley and Pam Wheatley/
St. Louis Dystonia Zoo WalkWeinberg/Newton Family
FoundationRosemary and Edward Young/
Detroit Dystonia Zoo Walk
$5,000 to $9,999Nancy and Rick BaerVicki BermanVirginia Bryan/Dystance4Dystonia
Drs. Mary and Mahlon DeLongThe Dorothy and Murray Feiss Foundation
Timothy EssonBetty FitzpatrickSara FlohrStephen Gebeloff/
Dystance4DystoniaJonathan and Joel GoldbergThe Henry and Marilyn Taub
FoundationHeymann-Wolf FoundationHumboldt Family FoundationJoyce JenereauxSheila Killham/Dogs4Dystonia
Dog WalkLenore KramerEmily and Thomas McNaughtonMedtronic, Inc.Mercantile Adjustment
Bureau, LLCMG O’Neil FoundationChong Hui and Terry NevilleNancy and Bruce NewbergRose and Arthur PerrinAbigail PetersonMarissa Rozenfeld/
Dystance4DystoniaKay and Steve ShraibergStandard Amusements LLCArlene and Robert SubinTeam Braden’s Brigade/
Pittsburgh Dystonia Zoo WalkCarole Tordi/
Dystance4DystoniaWalmart Inc.Elaine and Brian WeinbergCarol and Larry Weissenberg
$2,500 to $4,999AnonymousBarbara and Bruce AustinBarrow Neurological InstituteHeather Barskaya/
Dystance4DystoniaElaine BridgesHelen Capparell/
Dystance4DystoniaKristin Cinglie/Wacky 5K
for DMRFKay and James Cooksey/
Letter WritingMark Daus/X-Treme ApparelDominion FoundationFlorence K. Ferguson and
E. Michael ShineKathleen and Timothy FlanaganJoann Gerardi, PhD/Alexandra
and Martin Symonds Foundation, Inc.
Patrick GutierrezHappy Valley Blended
Products, LLCDeborah and James HarlowMarilynne Herbert Janet Hieshetter and
Eric GreenbergBarbara and Edward HoltvluwerHope Research InstituteJohnson & Johnson Family
of CompaniesNancy KaplanKohl’s Department Stores, Inc.Jessica Lawler/Stomp Out
Dystonia
Louise Chazen Banon Family Charitable Trust
Macy’sMicrosoft Giving CampaignSusan Miller and Daryn PakcykMount Sinai Health SystemHope Nightingale and
David EllisThe OneAmerica
Foundation, Inc.PayPal, Inc.Amanda Sleeper/Nashua
Dystance4Dystonia WalkTeam Billy Mac/Twin Cities
Dystonia Zoo WalkTeam DRD DUO/San Diego
Dystonia Zoo DayTeam Mount Sinai/Bronx
Dystonia Zoo WalkTeam Natalie TalentLaunch/
Cleveland Dystonia Zoo WalkTeam Sophia’s Squad/St. Louis
Dystonia Zoo WalkTeam Sullivan/Providence
Dystonia Zoo WalkTeam The E Team/Portland
Dystonia Zoo WalkTeam X-Treme Apparel/
Phoenix Dystonia Zoo DayCarrie and Stanley ValiulisAnna Voytovich and
Steven RudolphBinbin Wang, MD and
Aaron Lewis, MD
26
$1,000 to $2,499AnonymousAnonymousAnonymousSusan and Marino AguileraAllegheny Health NetworkAllianceBernsteinSandy and Wes AlumbaughAmazon.comAmeriprise Financial EmployeeGift Matching Program
Margie Anik, MS, CCCElaine and Robert BaerMary Ann and Richard BakerLisa and Mark BarbadoraDeAnne and Dan BeanJennifer and Michael BeauryHoward BermanAllison Botti/Dystance4DystoniaDiane BrandtJeffrey Brodsky, PhDJoe BrownJudith and Richard BryanLisette Bunting-Perry,RN, MScNCar-O-Liner CompanyMaria Carrera and Corey Fayman
Michele CarruozzoR. Barry CaslerTerri and Charles ChapmanTracy and Harlan CherniakChipotle Mexican GrillDale and Peter ClamanSheila ClarkMary Clark JanisLaura CobbChris CollinsKay and James CookseyDr. Kenneth Davidson
Jan and Charles DavisLinda Davis/Medford Chamberof Commerce Awareness Concert
Janet and Roger DeBard/DeBard Johnson Foundation
DMRF South Carolina Support Group
Ann and Bryce DurantSally and Maynard EngelFáilte IrelandMarilyn FedakBeverly and Richard FitzgeraldBarbara and Richard GayDenise and Bill GibsonCaren and Larry GoodmanGoogle, Inc.Bernice and Sam GreenbergJoshua HechtHenry Ford Neuroscience Institute
Robert HerkenhoffThe Hershey CompanyMaureen and Raymond HillerGlenard HohensteinMary Hurley Morton
and Gregory MortonSusan and Jim HuserIndependent Charities
of AmericaJulie and Ed Irvin, Jr.Susan JosephBarbara and Ronnie KahnUn Jung Kang, MDNancy and Alan KesslerDeborah Kilpatrick, PhD
and Kacey FitzpatrickEllen and Ronald Kisner
Jonathan Kovler/Kovler Family Foundation
William Lares/Big D.A.M.N. Metal Show
Barbara and Harry LehrTricia and Brian LewisRegla LichyJeffrey Lipsett and Lisa TabakRobin and Bud LondonAllison and Dan LondonJane MarksCharles MengesSuzanne and Brendan MulshineMichael NimocksHenry NissleyNorthwell Health/Feinstein Institute For Medical Research
Novi Surgery Center, LLCCheryl and Michael O’BrienFredelle and Martin OhlhausenLori and Joel Oxman, PhDBharti and Raman PatelThe Pittsburgh FoundationMarvin RabbinerLisa and Daniel RabeKathryn ReKrista and Ronald ReedBrock RennerLeslie RichmanRiverhills NeuroscienceSusan and Eric RobinsonDebra Ronning/Elizabethtown
CollegeVictoria and Bruce RosenthalRubens Family FoundationTammy and Robert SandersSusan SarilLauren Schleyer
Joyce Sederburg/Dogs for Dystonia Virtual Dog Walk
Mr. and Mrs. Jeffrey SherrinSylvia and Donald SimonEric SlaastedPamela Sloate/The Martin &
Roberta Sloate Dystonia Research Fund
Judy SoleyMary Specker Stone and
John StoneCarole and Joel Steiger/A.L. Levine Family Foundation, Inc.
Patricia Swanson and Ivan Clatanoff
TalentLaunchArlene and Joseph Taub Foundation
Team A Twist of Ed/Pittsburgh Dystonia Zoo Walk
Team Annie/Philadelphia Dystonia Zoo Walk
Team Blueberry/Phoenix Dystonia Zoo Day
Team Cappio/Bronx Dystonia Zoo Walk
Team Chicken Wing... Ain’t No Thing/Philadelphia Dystonia Zoo Walk
Team Columbia University/Bronx Dystonia Zoo Walk
Team Cronin/Bronx Dystonia Zoo Walk
Team Dawn & Emily/PhiladelphiaDystonia Zoo Walk
Team Dee/Portland Dystonia Zoo Walk
Team Dystonia Dynamos/San Diego Dystonia Zoo Day
Team Dystonia Muse/Bronx Dystonia Zoo Walk
Team Gestrich Dream Team/Pittsburgh Dystonia Zoo Walk
Team Huser/Cincinnati Dystonia Zoo Walk
Team Joanna/Philadelphia Dystonia Zoo Walk
Team Kathy’s Krusaders/Twin Cities Dystonia Zoo Walk
Team Kavin/Detroit Dystonia Zoo Walk
Team LuLu/Fresno Dystonia Zoo Walk
Team Mac Attack/Phoenix Dystonia Zoo Day
Team Marching for Marianne/Cincinnati Dystonia Zoo Walk
Team Montefiore Neurology/Bronx Dystonia Zoo Walk
Team Movers & Shakers 2018/Twin Cities Dystonia Zoo Walk
Team Olivia & Madison/Cincinnati Dystonia Zoo Walk
Team Omar/Bronx Dystonia Zoo Walk
Team Rachel/Detroit Dystonia Zoo Walk
Team Riverhills/Cincinnati Dystonia Zoo Walk
Team Rolling Stones/Phoenix Dystonia Zoo Day
Team SEP Dystonia Support Group/Philadelphia Dystonia Zoo Walk
Team Twisted Troops/Pittsburgh Dystonia Zoo Walk
Team Voice of Hope/San DiegoDystonia Zoo Day
Nancy and Bruce ThayerHillary and Brett ThomasSusan ThomasJean and Dan ThompsonTurner Construction CompanyUniversity of Pittsburgh
Medical Center (UPMC)Jean and John WalterDaniel WeinbergSherri and Mark WeinmanSally WeinmanJacqueline and James Cerqua/
West Winds Cafe & Catering, Inc.Linda and David WestfallMary J. B. Work Fund of the
Community FoundationPatricia and W. Dan Wright
$500 to $999AnonymousMary Jo AbbottAbbottDr. Ellen AirEmily Algier/Dogs for Dystonia
Virtual Dog WalkDouglas AlmoneyArchways McDonald’sFelice AxelrodRita and Guido Battaglini/
Brigantine Beach Clean UpB-Dale Club, Inc.Dana BeattyPatricia BiedessBloomberg LPTodd Bofinger/Billy McLaughlin
TributeMichelle and Chuck
Breitsprecher/Billy McLaughlin Tribute
27
Connie BrownKristen BrownDonna BuntenDrs. LuAnnette and John ButlerKay and Ronald Cabay, DDSLisa and Stephen CartolanoCentraState Healthcare
FoundationLinda and Harold ChizewerCiminelli Real Estates ServicesKristin Cinglie and
Paul IvankovicsCleveland ClinicSusan and Howard CodeKristin and Charlie CollierConstellation Energy Group/Exelon Foundation
Shirley CooperDiddy and John CullinaneDonna DantBarclay and Richard DardenCaroline DavidsonCarol and Joel DavisSandra and Donald De CiccioJulie DeLaurenti/Dogs for Dystonia Virtual Dog Walk
Julie DeLaurentiMark DonovanE & B Paving, Inc.East River Energy, Inc.Marcia and Richard EisenbergElizabethtown CollegeEllex iScience, Inc.Brenda and Lee Moss/
The Erdle Foundation, Inc.Sally and Michael ErnstbergerDoris and Stephen FaberJoel FarberRhona and Leonard Feigenbaum
Kenneth FlynnAnita FordMr. and Mrs. J.M. FoxFraternal Order of Police -
Northern Nevada Lodge #8Nilda FumusoLois and Norman GebeloffStephen GebeloffJohn GentryPenny and Mark GilletteVicki and Ernie Ginter, Jr.Carol and Peter GoldmanJennifer and Seth GoldmanMelissa Greenberg/Dogs for Dystonia Virtual Dog Walk
Andrea and Robert GreeneDiane and David GrossmanGuggenheimMartin GutenplanJudy and Geoffrey HandlerHartford Healthcare Medical
GroupDenise and Stephen HarwoodJerome HeisdorfStacey HendersonJanet Hieshetter/Dogs for
Dystonia Virtual Dog WalkCoral Hilby, MDJoyce HirschPatrick Hogan, III, DOTeresa and Ronald HortonAndrea IncroperaInterpretations Dance AcademyInvestors Foundation, IncJeffrey James Insurance
Group LLCPam KampfSusan and Daniel KastenWendy and Leonard Kaye
Timothy KeeganIsabel and Harvey KibelLori KiltyLaura KingKristina Kittilsen and
Steve WellerMelanie and Randolph KraftLori and Jimmy KrantzGail LandeJeanne LavanaMiles Lazerwitz, DDSLucy and Kenneth LehmanMeryl and Joseph LevinArthur LevineElaine and Shaul LevyLS Interiors Group, Inc.Lubeck Community Baptist
ChurchCarol and Edward MaierMargaret McCullaEmily Riggs McNaughton/Dogs
for Dystonia Virtual Dog WalkArlene MeintzWayne MellonDebbi and Steve MelzerCindy and Thomas MetherellLillian and Andrew MeyersMarcy Zinn and John MillerNan and Howard MillerMiller Cooper & CO. LTD. Charitable Foundation
Kelli and Marc MontanaroMontefiore Medical Center/
Department of NeurologyVicki and Steven MorrisGermaine J. Mulhern CPADeborah and Robert MymanJanice and Len NachbarZita Nathans
National Fuel Gas Company Foundation
Christi NeeseNew Directions FoundationNorth Jersey Brain &
Spine CenterMichael NovakJohn NyikosNYU Langone Medical CenterChristina and Jeremiah
O’ConnorStacey and Mark OvertonAmy and Bruce PaulGloria and Ron PetriJoan and James PiedmontePatrice and Jeffrey PiercePittsburgh PiratesMargaret PowellNancy and Larry PresentDavid PrestonCarol and David PurdyDavid RamirezBrenda and Charles ReavisDavid RichBeverly RogersRoisen Family Foundation, Inc.Ralph RoseMaxine and Gerald RosenSample CzarCarol and Ken SchwartzCharlene and Howard SchwartzMaria Scutaro and Terry MullenMarisa and Tomer SeifanPatricia and Howard SelfLynn and Jim ShafferArielle and Philip SherrillMitchell SlepianMargaret and Thomas Smith
Societe Generale Employee Charitable Gift Matching Program
St. Elizabeth HospitalRonna Stamm and Paul LehmanThe Goldie Anna Charitable
TrustScott StevensBonnie and Tom StraussDonna and Glen SuiterCindy and James TannerTeam #carsonstrong/
Cincinnati Dystonia Zoo WalkTeam Becky D’s Superstars/
Phoenix Dystonia Zoo DayTeam Big Tall Guy/Pittsburgh
Dystonia Zoo WalkTeam Cappolla/Bronx Dystonia
Zoo WalkTeam Cookie Angel/Cleveland
Dystonia Zoo WalkTeam Cyborgs/Philadelphia
Dystonia Zoo WalkTeam Daphne/Portland
Dystonia Zoo WalkTeam DeAnne/Portland
Dystonia Zoo WalkTeam Debbi’s Tribe/PhiladelphiaDystonia Zoo Walk
Team Flamingo King/Philadelphia Dystonia Zoo Walk
Team In Memory of Marshall R. Isaacs/Philadelphia Dystonia Zoo Walk
Team Kumon for Adina/Cleveland Dystonia Zoo Walk
Team Maglio/Philadelphia Dystonia Zoo Walk
Team Meltons & Friends/Bronx Dystonia Zoo Walk
Team MGC Supports DMRF/Cincinnati Dystonia Zoo Walk
Team Monroe/St. Louis Dystonia Zoo Walk
Team Nicko/Cincinnati Dystonia Zoo Walk
Team Paula’s Team/ProvidenceDystonia Zoo Walk
Team Poetry In Motion/Philadelphia Dystonia Zoo Walk
Team Reese’s Pieces/St. LouisDystonia Zoo Walk
Team Reno/Providence Dystonia Zoo Walk
Team Robin’s Nest/Bronx Dystonia Zoo Walk
Team Scotty and Quintyn/St. Louis Dystonia Zoo Walk
Team Tilted Theisens/Twin Cities Dystonia Zoo Walk
Team Twisted Sister/Detroit Dystonia Zoo Walk
Team Twisted Sisters/St. LouisDystonia Zoo Walk
Team Vicki Glicken/ClevelandDystonia Zoo Walk
Travelers Community Connections
Linda TroyLaura TubridyAmy TutroneUBS Employee Giving ProgramUnited ShoreUnited Way of Greater
Capital RegionRoberta and Arnie Ursaner
28
Verona Liquor License LLCJulia VollmanJeanne and Patrick WalkerMr. and Mrs. Milton WarsawThe Wawa FoundationJulie and David WeismanLeona Weiss McCargar and Scott McCargar
West Virginia Central FederalCredit Union
Whole Foods MarketSusan and David WilliamsonKaren WinterWolverine Packing CompanyMary Ann WomacSaundra and Marvin ZessarElizabeth Zimmerman Donaldson and Jeffrey Donaldson, MD
Patricia Ziner
$250 to $499Ronald AbelACESAcorda Therapeutics, Inc.Aetna Foundation, Inc.Akers Chiropractic ClinicFreyda and Jeffrey AlbinAlliance Solutions Group/Cleveland Corporate Challenge
Alvarado HospitalAmy AmendolaVirginia and Robert AmesLinda and Dennis AndersonApple, Inc.Sandra Aresta and Michael KatzSandra AsaroJoy and Avi Avidan
Antoine BabuleKim BangDr. and Mrs. Irving BarasBaron Family/Dogs for Dystonia Virtual Dog Walk
Phyllis BassAlexandra and Michael BassikMary Ellen and Michael Battipaglia
Judy and Ted BaumhauerLucy and Ellie Beasley/Dogs for Dystonia Virtual Dog Walk
Christine and Jay Beattie BelaCoop Animal Hospital
of North ParkStuart BellAnne and Robert BencksErica BenderJo and Larry BenesiPatricia and Andrew BeranBerco Tank, LLCMeredith BerkmanMeredith Berkman and
Daniel MintzLinda Berman and Paul Abramson
Big Tree Fitness LLCAnn BikalesScott BirdMelissa BisagniAnni and Henry BlackEsther and Charles BleyBarbara and Ronald BordenJeri BoydShirley BradleyMarjorie BrandenburgEdward BrandtAllison Brashear, MD, MBA
Lisa BreedveldCarole and John BrighamBrooks Construction LLC Karen BrownMary BrownBernard BrownsteinBernice BryanRebecca BurnsCardinal USA Fuel OilEdward Carnvale, DPMNeelam ChandChapter 3 Copyediting LLCElizabeth and John ChidseyChodorcoff Family Fund of theCommunity Foundation of New Jersey
Joyce and Kim CinglieCity of BrigantineYvette ClappAndrea ClaussenCathleen CohenStephanie ColegroveJennifer and Paul ColoneThe Community College of
Rhode IslandJames B. ConwayLaura CrawleyCarolyn CruzElise and Michael CunninghamCherry DaigleDeborah and Douglas DarbyDefinitive Staffing Solutions, Inc.Marcia and Kenneth DenbergCarol and David DirectorMs. Louis Dodaro and
Adrienne SaboraDouglas DudgeonFlorence Duggan-BayneDunkin Donuts
Debbie Durrer and Richard Fantozzi
Anne Nathans Eddy and William Eddy
Isabel and Harry EdwardsElite Sports CenterBetty EllerinMargaret and Leon EllinAndrea Elliott/Dogs for
Dystonia Virtual Dog WalkDavid EllisDorothy and Edward EngelkenCynthia and J. Michael ErdeyJanet FairbankAnna FaragunaJeris and John FergusonJulie FireFirst Presbyterian Church at Caldwell
Susan FishbainAnn and George FisherGale and Tim FlanaganCarol and Luther FlynnJulie and Steven ForneyRobert FrancisRebecca FrelighLouis FrenchAbby and Michael FriedmanAngela GarciaLaurel GarofoloJordan and Daniel GasparRobert GebeloffGladys George and
Stuart Orsher, MDBarbara GilbertEmma and Robert GilbertNorma GinsbergVicki and John Glicken
The Goat Farm Petroleum Terminal
Gail and Donald GoldsteinPatricia GollmerRita GolubRonald GreenbergMr. and Mrs. John GriswoldAaron GrossmanNancy GutierrezThe H Group, IncMaryam Haghbin and
Ehsan Shahmir, MDMichael HalberstamDana HallenbeckAnne HanfordDelores and Gordon HansenElizabeth HarrisHarriet HartsteinCynthia and Norman HarwellLauren and Marc HausmanBrian HaysMichael HerkoHermes Sports & EventsPaula HoogerlandScott HoppingNancy and Jack HowieElaine IgelmanTimothy Insogna/ACES
Casual FridayVanessa and Marc JacobsFrank JansenJefferson Surgical Center
at the Navy YardGail JenereauxJerome A. Kaplan and Deena L. Kaplan Family Foundation, Inc.
Michele KarpovichGail and Robert KatzLisa and Steve Katz
Gail and Mark KelleyRichard KelschKemper HouseKatie KildeaCheryl KillhamRae and Evan KleinMargaret KnappNorie Knezetic/K Creative
Group, Inc.Susan and Matthew KnightKnot MarineCassandra KopecAndrea KovachGeorge KramerKrebs Chrysler Dodge
Jeep RamKumon of StrongsvilleMarlene & Jo-Anne Kunin
Philanthropic Fund - Jewish Community Foundation
Susan and Howard LaskyMichelle and Norman LattmanMark LeDoux, MD, PhDKasey and Todd LeinbachLenny’s BarLeonard & Sons Complete
Car CareSusan LevyKaren and Ben LewisRosealie LiebovichDouglas LightboundDee LindeLindsey’s Tumbling SchoolJudith LipsettJamie and Gary LittRobert LosikJames Lowery, MD and
Dawn Lowery, PhDHeather and Carl Luepker
29
Andrea and Steven LurieAnnette and Michael LynchLindy MakarDebra and Joel MargolisMaryvale Teachers AssociationJudith and Glenn MasonAlana and Ricky MaxShelley and Guy MaynardJoe MazzoLinda McGlassonMichael McGrathEllen McHugh Suzanne McIntireJames MeadeTerry MeekMeier Vet ClinicSharon Menaldino, EdDMichael C. Davis, C.P.A., Inc.Michigan Head and Spine Institute
Barbara and Richard MillerMillhiser Smith FoundationSally MitchellCarol and Jim MollerDavid Moltke-HansenReta MooreNancy K. Pruett, DDSMarilyn and John NewhouseGale NolanBarbara NoonanColleen and James O’BrienJeanne and John O’ConnorMary and John O’DonnellJoan and John O’RourkeJeffrey OxmanPatricia and John PaceMaddie Paolero/Dogs for Dystonia Virtual Dog Walk
Loren Parsons
Alleyne and Edward PatrickJill PazolkaJohn PazolkaL.A. PerkinsKathleen and Peter PflockRussell PhillipsGail PhippsPhysical Therapy Orthopaedic
Specialists, Inc. (PTOSI)Michelle PinchevJane PiroLaureen PrimmerMaureen PskowskiSally and Ronald RabinowitzRevance SHARE THE REV TeamBeth Cliffe Richardson and
Harry Richardson Laureen Robben/Dogs for
Dystonia Virtual Dog WalkRose and Alvin RobinsRogers Middle School Student Council Hike
Marcia and James RohrbaughMichelle and Marc RosenbachSusan and David RosnerCarol RotoloJill and Randy RoushRoyal Wire ProductsRoyalton Hills Lions ClubCynthia and Steven RozenfeldBetty and Edward RudolphRoberta Rudolph Salas and
Javier SalasCarol RyanSalon MerakiJohan Samanta, MDMalerie SamonaSusan and Samuel SandbergPauline Sangiacomo
Jil and Jordan SchapsMargaret SchlegelDonald SchlosserRobin and Donald SchoberGloria and John SchroederMichele SchusterKate SchwartzJoan and Arthur Segal, MDJonathan ShefferNancy SheffieldShell Oil CompanyJoyce and Sheldon SilversteinRheta SmithJulie and PJ SolitJoanne and Howard SorkinSteve SowkaSt. Philomena School Inc.Larry StahlSusan and Murray SteinfinkMyra and Jerry StemermanBarbara StewartEleanor and Scott StolerIra StraffLaurie Strawgate-Kanefsky, PhDand Paul Kanefsky Esq.
Barb StruchenRebecca and Collin StuartKatie StuartSuzanne Stutman and
Jon WilkenfeldSunrise Optimist Foundation
of FreeholdMichele Tagliati, MDSusan TaylorTeam Agony of DeFeet/
St. Louis Dystonia Zoo WalkTeam Allison Dahlstedt/
Providence Dystonia Zoo Walk
Team ALRIGHT ALRIGHT ALRIGHT/Detroit DystoniaZoo Walk
Team Anderson/Bronx Dystonia Zoo Walk
Team Carol’s Curesaders/Philadelphia Dystonia Zoo Walk
Team Chief Spencer/Phoenix Dystonia Zoo Day
Team Cosplay It Forward/Pittsburgh Dystonia Zoo Walk
Team Felix/Fresno Dystonia Zoo Walk
Team Hartford HealthCare Chase Family Movement Disorders Center/ProvidenceDystonia Zoo Walk
Team Izzy’s Soldiers/PittsburghDystonia Zoo Walk
Team Jansen/Cleveland Dystonia Zoo Walk/PittsburghDystonia Zoo Walk
Team Joanna/Philadelphia Dystonia Zoo Walk
Team Keagan/Detroit Dystonia Zoo Walk
Team Lisa Vrabel/Detroit Dystonia Zoo Walk
Team LynnMcKayFunderburk-KuzmaVerduzco/Phoenix Dystonia Zoo Day
Team Maddy/Detroit Dystonia Zoo Walk
Team Marisa/Fresno Dystonia Zoo Walk
Team Meehan/Bronx Dystonia Zoo Walk
Team Newbold/St. Louis Dystonia Zoo Walk
Team One Step at a Time/Bronx Dystonia Zoo Walk
Team One Twisted Sister/Pittsburgh Dystonia Zoo Walk
Team PAHrtners/Philadelphia Dystonia Zoo Walk
Team Pat/Philadelphia Dystonia Zoo Walk
Team Rita’s Roses/Philadelphia Dystonia Zoo Walk
Team Sherri/Detroit Dystonia Zoo Walk
Team Solstice Sisters/Philadelphia Dystonia Zoo Walk
Team SquareHead Brewing/Bronx Dystonia Zoo Walk
Team Stoney/Bronx Dystonia Zoo Walk
Team Tenacity/Philadelphia Dystonia Zoo Walk
Team The “B” Squad/Providence Dystonia Zoo Walk
Team The Nature of Things - Ms. Deb/Providence DystoniaZoo Walk
Team Tonya’s Tribe/Cincinnati Dystonia Zoo Walk
Team Yoomie Zoomie/Bronx Dystonia Zoo Walk
Team Zooney/Cincinnati Dystonia Zoo Walk
Temple ChallengeGrace ThielenJoyce ThielenJoan ThompsonSusan and Alan Tivoli
Traci and Jamie TrappAlecia and Gregory TroyUnited Way of Greater
Philadelphia and Southern New Jersey
UnityPoint HealthUniversity of Iowa Community
Credit UnionTeresa VaughanDeborah VisusVizmeg Landscape, Inc.Erica and Robert VrabelJulie WagshalSharon WagshalMartie and Stephen WartalskiMarilyn and Jerome WassermanSandra WassermanLauren and Jeff WaxmanDiane WebberAdrian WeigartRoberta and William Weinsheimer
John WeintraubWells Fargo Advisory Jeans DayArlene WeltmanGail WestLynne and Huntley WhitacreLisa WhiteCindy and Donald Whiting, MDAnnette WilsonDiane and Don WixtedScott Wood, JrRobert YandtVirginia YoungHolly YoungwoodTalia ZapolanskiDavid ZappitellLeah and Jeff Zygler
30
$100 to $2494Walls.com, LTDPeggy and James AbernathyBeth and Larry AbneyPaige and Dennis AdamsGreta AdlerBarbara AdolfsonAgape ABF Heights ChurchBrenda AkinErdal AksoyMaria AlbaneseEmily AlgierCharles AllenAngie and Alex AlleyKaren Shoglow-Alvarado and James Alvarado
Angie and Louis AmatoSuzanne AmendolaLorraine and Curt AnastasioRuth AndersonColin AngelottiAnonymousAnonymousAnonymousAnonymousCarol and Sheldon AppelAnn AppelbaumLinda ArgentoJoseph ArlottaKerry ArmstrongJudy and Tom AronsonArrowhead Lock and Safe, Inc.Lora AshcraftBuzzy AugustMarilyn and Craig AuseMohammad AzadDeborah and Richard BailineKristin BainbridgeChris Baker
Ethel BakerCindy and Jack BalcolmSusan Baldwin and Gary Gepner
Bank of America Charitable Foundation
Donna BaranAmy Barkin and Claude JacksonJane Atwood BarlowJanice BarlowSusan and Cliff BaronCatherine BarrieHelen and Frank BarryBetina BartlettSister Patricia BassettRita and Guido BattagliniDiana and Kenneth BauerRhonda and James BeaneMargaret BearerShannan BeasleySarah BechtoldDavid BeckKara BeckFelicia and Irv BeitlerJoyce BelchicDiane and Joe BelkevichSara and William BelkovAmanda Bell and Barbara BellRosemary and Thomas BellaireHelen and Rick BemporadWilliam BenjaminSusan BennettElyse BentonZelda and Sol BergerRayzella and Frederick BerkoHelaine and Roger BermanJackie and Richard BernardJoan Bernardino
Arlene BernsteinMarc BerthiuaumeShirley and Roscoe BeverlyCharles BienerPhyllis BieriAngela F. BindaJoanne and Peter BlaauboerJill and Barry BlackerFrances BlackmanNatalie Blake and Steven Schwartz
Twila BlankenshipShirley and James BlueRosemarie and David BlumBrenda and Mark BlumenthalJulie and Jonathan BobbChris BodineLinda BoeckmanDenise and David BoenteDiane BomgardnerDonna BooneRoberta and Seth BorgJessica Borowick and
Paul FlachMatt BourkePhyllis and Thomas BouthillierGerald Bowling, MDKay BoydJane and Allen BoyerDianne and Marc BraerJessica BragdonJane BrashSara BrauerJean and Lowell BraxtonSharon BrelloKyle BrennanNorman BrennerNicolet BrettDeborah and Mitchell Brin, MD
Henra BriskinNancy and Loren BroaddusPatrick Brogan/Dystance4Dystonia
Dorothy and Roger BrooksAnn BrownGail BrownGregory BrownJeffrey BrownJo-Ann and John BrownJudith BrownKathleen and Kenneth BrownBetsy Brown BraunIrene and George BrunnerDebra Bruno-WalkLaura BryanVirginia Bryan/Dogs for Dystonia Virtual Dog Walk
Don BuchalCrissie BuckwalterMary and Paul BuengerMargaret BulmerTodd Bunch/Dogs for DystoniaVirtual Dog Walk
Marina and Travus BurchClayton BurnsKendal Burns/Dogs for Dystonia Virtual Dog Walk
Suzanne BurtonTracy Buseman-CarlstromJennifer BussBussey’s Painting, Inc.Estelle ButtsKathy and David BuyanskyNancy Byl, PhD, PTEthna and Jim ByrneMageen CainesMaria and Scott CalderwoodTommy Camm
Dayna CampPatricia and Patrick CampbellHeidi and Patrick CappollaRobert CardozaYvonne and Thomas CarneyMyra and Robert CarrierJohn CarrollSusan and Paul CarrollYolanda and Thomas CarrollDarlene CarruthersLauren and Ann CarterAnnette CatalanoJason CavalieriHelena and Sean CawleyAnthony CecereJacqueline and James CerquaToni ChadwellAbeldia ChampionCheryl and Joseph ChamplinChristopher ChapmanCynthia ChapmanElizabeth ChapmanLori CheneyStephanie and Steven CherniakEvelyn and Joseph ChoroserLarry ChristensenCathy ChuangShirley and LeRoy ChuppSusan CiolekJames Clark, Jr.Barbara CoatsMiriam and Aaron CohenBetsy CohenJanice and Harold CohenJane CohenLenora CohenRocco ColangeloSuzanne Henley and
James Cole
Kathleen and John ColesiDiane CollinsAnthony Colucci Patricia and Kennie CombsCommonwealth of Virginia
CampaignCommunity Physical Therapy
and Rehab at Stone’s Crossing
Candace ConacherMary ConlandVirginia and Vincent ConleyMary ConteKaren and Charles ConwayElizabeth CooneyPatricia and Michael Cops
and Sarah FinchCostco WholesaleCatherine Cote-VervilleBarbara and Martin CotlerBruce Cotugno, MDVivian and Gerald CoutinhoBruce CowanLindsay CowanCox Family PharmacyCheryl and John CraigJohn CraikNebra and Jacob CranePatience CrollRosemary CroninLuann and Larry CroyCatherine Cullen BohlmanWilliam CummingsJohn CunninghamKaren and David CunninghamSheila Cunningham and
Colleen O’ConnellJohn Curry
31
Myrna CurtisMary and Edward CurveyCustom Biogenic SystemsEdward CwalinskiEmily, Rosemary and Jacques
DahlstedtStacy and Jack DahlstedtLinda Dale ShaefferMegan DaleyStephen DarmofalAndrea DarstHelen and Charles DavidEdith DavidsonRichard DavidsonDanny DavisLezli DavisMaria and John DavisPeggy DavisSuzanne DavisCristina De La Ossa and Hector Salazar
J. Antonelle de Marcaida, MDPam DeLongSuzanne DeLorenzoJeanne DelSignoreNancy DeMaraCathy DenisKathleen DennickRoberta and Patrick DerosaStacie and Richard DeSalvoJoyce DeutschPeter DevinoJennifer DeVore/Dystance4Dystonia
Nancy and John DickPatricia and Jerry DickinsonLaura DiduschDouglas Dimitri
Julie Blackman and Mitchell Dinnerstein
Jeanne and Albert DipronioJoan and Thomas DirmyerCaitlin Dittmer Dorothy DobosLaurie and Patrick DoddAmy and Ira Dolnick, DDSNancy DonaldsonJennifer DonhauserErdal DonmezKathleen and James DooleyAphrodite and John DoranMary Ann DrimerCharlotte and James
DrinkwaterDonna DriscollJudith and Sydney DromgooleAudrey and Lucio DrozdowskiPhyllis DubetskyJoan and Dennis DuBoseAlan DubrowJeannine DufaultMargaret and Paul DufaultAnnette Duffy OdellJacqueline and Matthew DunnBonnie and Francis DurandDr. and Mrs. Stephen DvorinLoretta Dye and Dennis DyeEllen and Hal EagerCharlotte EdelmanBrooke and Kenny EhrmanJanis Eiler Nancy and Mike EisenstadtRegina and Gregory EitzenJoyce and Donald ElingSharon EllerinPaula and Lewis ElliottJeffrey Ellison
Barbara EmersonCharles EngerSarah and Charles EnzorNicole and Robert EpplenJason EpsteinChristine ErlandsenMichael ErneyIrene and Carl ErsingCarol and Donald EsselmanRebecca EsselmanHeidi EvansJean EvansWendy EvansF&M CaresJeanne and John FadaleRebecca FahrerAnn and Joseph FalciRich and Jackie FallonBeth Farber and Steve LaserVirginia FarleyBill FarrRosanne FayJessica Feeley/Dogs for
Dystonia Virtual Dog WalkCarrie FehlbergLeslie FeinbergMichael FeinsteinElizabeth and Pavel FeldshteinToni and Joel FenchelBarbara FernandezKristen FesseleKristen Fessele/Dogs for
Dystonia Virtual Dog WalkDebra and Dan FieldsDarren FieldsOwen FieldsConnie FiggieKara and Richard FingardDiane and John Fiore
Luisa FishburnMonna and Danny FisherAlice Fishman and
Michael DipietroMyrna FishmanPamela and Barry FlanaganTherese and Dennis FlanaganMargaret FlanaganLynn and Saul FleerLisa and Michael FlorjancicEdward FoleyFortune Fish & GourmetJennifer ForwoodPeggy and Donald FosterMary Jo FowlerSunshine FoxJeanette Franco and
Alex MilhommeDeni Frand and Mark GreenBette and Louis FrankeSharron FreemanIrwin FriedmanJodie and Sanford FriedmanFujirebio Diagnostics, Inc.Lynn and G. Jeffrey FullertonKaren GaarJudy and Mel GabrielSharon Gallagher and
Michael SussmanJeanne GangMelissa GanleyCindy-Lu GansSusan GanzVendora and Arthur GappertAllison GarcyBarbara and Edward GartsideDenise and Greg GaskellNina and Andrew Gaspar
Kathleen and Charles GassSusan GaughanLee GaydosBarry GeislerKenneth GelburdJacqueline and Andrew
GermanowHeather GerteisenRandal Gestrich Donna and Edward GewirtzRandi GewirtzDr. and Mrs. Bruce M. GilbergBillie and John GillespieAna GiovinazzoCindy and Neal GittlemanStacey and Evan GlanzM. Pauline and Paul GlatleiderJoan GlennonRandi Glickberg Charitable
Fund at Schwab CharitableDarlene GlowczewskiBrenda and Howard GoffenMindy and Michael GoldbergJudith and Alfred GoldmanLauren and Matthew GoldmanGoldman Sachs & Co.Craig GoldsmithDoris GoldsteinColleen GoldsteinTahl and Eric GoldsteinJill Renee GoodElizabeth GoodgionRobert GoodmanEllen and Jay GordonDeborah and Michael GordonBarbara and John GottliebDiana GouldKrista GrabowskiAnna Grames
Carole GravesPamela and Douglas GraysonDonald GreenJennifer GreenMary GreenDavid GreenbergJulie GreeneSusan and Adam GreeneJune GreenleeLori and David GreenwaldThomas GriffoNancy GroomEllin and Robert GrossmanMonique Groulx, PhDMary GroutSheri GrubeAbby and Neil GurevitzEyal GutentagElaine and Michael GuthrieJean HaidPamela HailStephanie HaileyJana HamDawn Hamilton Phil HamiltonMelissa HammLisa HamptonJeanne HandmanArthurene James HaneyJohn HarderChristine and William HardmanHarem Boutique Inc - DBA
Harem & CompanyTodd HartBarbara HarteJill HassebrockRebecca and Fred HastonWalter HawrylakHayes Family Farms, Inc.
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Janet HeatonStephen HegnerSherry Klein Heitler and Dan Heitler
Ann and Bruce HellerLaura HendersonMichele HendrickKathryn and Ted HenryPeggy and William HermanNeal Hermanowicz, MDCharlotte and H. Raul
Herrera, MDNancy and Robert HershfieldRosemary HertzShirley HewittNorma and Michael HigbeeSteve HillsMarianne Hirsch and Robert Hickson
Nancy and Allen HirschfieldJ. Carroll HitchLoretta HodsonJoyce and Timothy HoerstKaren HoffmanWilliam HoggCarrie HolderbaumKristina HollandBeverly and Jeffrey HollanderMichael HolokaJoan and Steve HolzmanJudith HomerRona and Seymour HomerNancy and Albert HomiakSusan HopkinsHopkins’ Handyman ServicesMichael HoranDianne HornKenneth HortopRichard Horwitz
Cheryl HouseConstance and Edward HowePatricia and John HowlettPhyllis HubbardChristine and Kenneth HudsonLinda and John HugginsDouglas HughesSandra HuntMichele HurleyAnthony IglInfused Solace Massage
TherapyJudith IngelidoKathleen Ingham-Baden and Thomas Baden, Jr.
Jerome IsaacsNancy and Michael IsaacsonBeth IsraelJoseph IzworskiHeather Holland and
John JacksonMr. and Mrs. Terry JacksonNancy and Allen JacobsonBarbara and Eric Jaffe, MDMaria and Robert JefferiesLari JimmersonJack JimisonTeresa and James JoergerAlexandra and Patricia JohnGretchen JohnsBarbara JohnsonElizabeth JohnsonJack JohnsonMaurine and LeRoy JohnsonRobin JohnsonSarah JohnsonElaine JonesRick Jones
Mavis and Carl JonssonThe JorrellsMargie and Ronald JoryArline and Rich JosephbergDebra JosofDebra Josof/Dogs for DystoniaVirtual Dog Walk
Giselle Josof/Dogs for DystoniaVirtual Dog Walk
Ramond Josof/Dogs for Dystonia Virtual Dog Walk
JP Morgan Chase FoundationKay JudsonJustGiveSteven KalinaSarah Kalish and Sam WeilBen KamenEllen KanterMiriam KapferDaryl KaplanAnita and Michael KaplanBarbara KapnickKelly KarasDavid Katz, MDDiane KatzDyan Kaufman, PhDPaul KavanaughJamie and James KaylerCynthia KeefeKathleen KeeganLaurie and Charlie KeenanLaura KelemenSusan and Richard KelinKaren KellyMartin KernCarrol KerriganJoyce and Donald KesslerMarilyn and Mark KesslerSharyn and Ronald Kessler
Lincoln KilianHelen KilliusJennifer KimmelTammy and Les KinderJoel KingMegan KingMichael King/Dogs for DystoniaVirtual Dog Walk
Katherine and David KinneyTodd KirwanStephanie and Gregory KitchinKaren KlausegerMarilyn KleinElaine KligermanVicki Klinger Kevin KnaackJean and Michael KnabLinda and Richard KnabCourtney KnoxJudith and Jerome KochCarol KoepkeKaren KomoroskiRhoda KopyMaya and Ittai KorinPhyllis and Martin KornMichelle KosalCraig KoshkarianGary KrahnRosemary KrauseHarriet KraverJessica and Barry KraverJoan and Thomas KreckmanLynn KrejciKimberly KriegerKrogerCarol and David KrootPaul KruckeBarbara KrzyzekElizabeth Kugel-Whetstone
Ralph KuhnLeslie and Leonard KulbackiSandra and Kenneth KuskaEmily and Jeff KuvinThomas LabaghLachman Family Foundation Inc.Martha and David LambertMarti Lambert/Utensils to GoJudith and Deno LangisMary Jo LaPorteDonald LarsenDr. and Mrs. Fred LaskyRebecca and Dennis LaughlinJulie LaVigneSerena and Dick LaVineJessica LawlerJudith and Ronald LawlerClara LawsonVirginia LawtherStephanie LeachJudith LeavittAudrey LebedzinskiLisa LefkovitzIra LeibowitzJudith LeinbachLeominster Monument Co.Lynda LeporeBarbara and John LeschisinAndrew LesterCheryl LevensonKaren and William LevineSue LevyMeg and Daniel LewisTsao-Wei Liang, MDToni LichmanShaynee and Michael
LichtensteinNicole Liming
Lynda and Bruce LimpertLinch Family Charitable
FoundationDee Linde/Dogs for Dystonia
Virtual Dog WalkSandra LindhElizabeth LinfootLinn Animal HospitalRichard LiptonMarci and Richie LittLorena LittonMing-Jai LiuDebra LivingstonMillie LoebBruce LoeserAna LopezPatricia Loquet and Larry Trachtenberg
Elaine LosquadroSusan and Thomas LotzBronlyn LouckCyndy and Pete LounsburyElena and Dylan LovellNora and Richard LucaDeborah LundBernita LundquistDelana and Michael LynchMichelle Annette Lynn and
Janet Mae McKayAnita LyonRebecca and David LyonsBrian LysellHollie MachenEllen and Cletus MagsamenPatricia MaguireDr. and Mrs. Arthur MahlerStephanie MajcaMajor Health PartnersMarilyn Malkin
33
Musetta MaloneCharles MaloneyJanet MalsanLucille and James ManakThe Mandel FoundationAnita ManesJulie ManningJon ManzanaresLinda and Gordon MappesJohn MarcucciMarkle Gift FundStephanie and Stevie MarksJoyce and Michael MaronPeggy Marquoit and Margaret
Marquoit and David MarquoitCorey MartinezKathryn Matheson and James MacMillan
Carol and David MatsonMary Beth MatteoAlisa and Edward MatushekEdwin MazoueAnnette and Charles McAteerDan McCafferyDavid McCarthyJudith McConnellJudith and William McCourtneyMary Kay McCoyRick McCrackenJohn McCullaNancy and Eddie McCurdyThe McGraw-Hill CompaniesMargaret and Joseph McHughand Ellen McHugh
Billy McLaughlinElaine McLeanStacy McMinnNikki and Herbert McMurtryKathy McPeters
Rebecca McReynoldsStacy MeadeMark MeanyNaomi and Lewis MedoffCollis MeehanIvan MeehanLisa MeindelGrace and Jonathan MeltonMary and Ronald MeltonNicole MemmottMaria MendozaJanis and Alan Menken
Charity FundSherri MerrifieldKathleen Messina and
Bernard BeckDonna and Dan MetherellMichelle and Wendell MetteyErica MeyerMarlene MeyerHelen and Edwin MeyersSheila MichaelSharon and Louis MilesJanet and Douglas MillerJency MillerPatricia and Michael MillerStacie MillerTimothy MillerDiane MillikanMark MilsteinCheryl and Michael MinikesMinute Man ArcMarla and Robert MishlerEric MishloveMary Jo MiskeDeborah MitchellMoFab Inc.Corinne Moller
Jeanne Moltke-Hansen and Harry Schenk
Rosie and Michael MoncriefEllen and Bruce MondschainPaulette Mondschein and
Kenneth GarrettJanell and Gary MonettiNathan MonroeBrandon MontgomeryMichelle and Forrest MooreRebekah MooreTonya MooreMary MorisetteMary Morisette/Dogs for
Dystonia Virtual Dog WalkGreg MoritzJeffrey MorrisJessica MorrisJean and John MorrisKim MorrisJay MorsteinKaren MossLori Moss and Gary Oltmans, PhD
Movement FitnessGail and Thomas MurawskiMarilyn MurlowskiJane and Mack MurphyMartha MurphyRobbie and Ron NaborsDeborah and Isaac NachbarJessica Nadel and Joshua FefferElizabeth and Rami NahmiasSandra and Robert NathansJennifer NeeMaryRae Nee/Dogs for
Dystonia Virtual Dog WalkMaryRae NeeDebbie and Ed Nelson
Heather NemecJulie NeubacherAnita and Charles NewbergFlorence NewsomLonnie and Jerry NicholsAlexander NicoloffBrenda and James NixAlison Nixon Patricia NobsNorth Mianus SchoolCarol NortonElaine and Jerald NortonJennifer NotarSamantha and Michael
NussbaumPatty and Michael OaksEmma O’Brien-GayesShirley O’ConnellKathleen O’ConnorPatricia O’ConnorSusan Odegard WoodKathleen O’HareAntonia OhlePaula and Richard OkolowiczRebecca Olson and
James HainesSandra and Donald O’MalleyCherie and Michael O’MalleyMax and Ruth Oltarsh
Foundation IncPriscilla OnizukJudith OpperLisa and Josh OstrovskyMary O’SullivanLily and Jon OtisLee OvertonJohnnie OwensToni OwnesOwl Orthodontics
Kristine PadeskyJulie PallachBeth and Tony PaoleroKaren PapkeCarrie PappalElizabeth Parese and
Joan ChambersBarBe and Dave ParisAnthony PassarelloDebra and Joel PasternackDennis PatroneJamie PattonMary and Jerry PattonJennifer PaulsenCarter PaulsonPayPal Giving FundsDale PearceRosse Mary PeaveyVicki and Schuyler PeckJanet PerezElizabeth PerkinsPatricia and James PerkinsRobin Perna-Edwards and
Scott EdwardsSarah PerryGail PestineSusan PestineJamie and Matt PestineSheldon PestineZach PestineJane PeteringGary PetrieBarbara and Thomas PfendlerPamela and Roger PhelpsMelissa and Roger PhelpsDoug PhilipsBarbara and Jeff PiermontMary and Tom Piette
LuAnne Pinedo Madden and David Madden
Hallee and Dave PitterStephanie Plantone-Hubbard
and Anthony HubbardWilliam Plate, JrMary PleasantsLorraine and Stan PlettTeresa PodimatisKarelyn PohlSharon and Francis PolahaCharles PolcasterCarol PollackLynn PollackLee PollanBarbara Pollard and Mitch SteinAshley PolleyDavid PortmanWilliam Powell, Jr.Janis PowersMacKenzie Prater and
Jaykob WalkerPraxair Matching Gifts ProgramNaomi PrellMarianne PrenticePreppy PetSally and Frank PrestiDana and Marc PriceSharon PriceJanice and Kenneth PrintenCarolyn PritchardDiane and Robert PritchardJoanne ProschingerJane ProsnitBarbara PryorPatricia PulliamJasmin and Dhatri PurohitTeresa PydynkowskiSandra Quinn
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Freida and Charles RabautLinda RabinoNancy and William RackoffSusanna RagatzRita and Stan RaiderKimberly RakosHeidi RamosRegina RathDeborah and Michael
RauscherYvonne RebakLinda and James ReedLillian ReederJeanne ReeseS. and W. ReeseLynda ReevesPaul ReiberJoni ReimannKaren ReiterPatrick ReppenPaula and Thomas RevekantDonna ReyesJanet ReynoldsJennifer ReynoldsGreg RhoadsJohn Rhyne IIIJoseph and Anna RichardNancy and Sandy RichmanAshley RiedyAnne Rieschick Jane and Eugene RingThomas RiniLaureen RobbenBarbara and Howard RobertsMichael O. RobertsLaura RobinsonShirley and Mark RobinsonMelinda RochaEllen and Gerald Rodis
Margaret RodkinViolet Roghair/Dogs for Dystonia Virtual Dog Walk
Violet and Richard RoghairAudrey RohlingerDenise RoistacherJamie and Jon RomickJody Roosevelt/Dogs for Dystonia Virtual Dog Walk
Rebeka RosebrughAyelet and Aaron RosenBarbra and Reid RosenRhonda RosenRoslyn RosenSally RosenEsther RosenbergLisa RosenfeldVeronica and Ron RosenquistLee Rosenstein-GregoryRoseville Lions ClubMichael RotayGayle RothNancy RothMuriel RothmanEllen Rothschild-Taube and
Mitchell TaubeJoyce and Walter RoubaCarol RowbergCheryl RoweLauren and Josh RozbruchMerton RubensDaniel RubinGail RudoLinda and Billy RueDeborah RunckJennifer RusbyElizabeth RushKlaus Ruter
Ruth and Eugene SacksSandy and Sammy SahnLinda and Steve SahnEric SalasRodolfo SalasRodolfo SalasHoward SaltzmanMerry SalyersBruce Sams, MDKathleen SamuelJohn SanFilippo Rosaria SanteeAmy SaphierFaye SarkowskyJennifer and Gregory SattlerMarilyn SaulSherrie SavettSusan and Joe SchackmanSusanna and Noah SchanklerMonica and Rick SchatzAnna and Jeffrey SchiefelbeinJoanne Schiffman and
Nicholas GumasMiriam and Theodore SchiffmanJoshua SchillerRachel SchlabszMary Ann SchmitShanna and Brad SchmittJane and Henry SchneiderPaula SchneiderPamela and W. Winslow
SchrankNicholas SchriderMarilyn and Monroe SchulderMarilyn and Russell Schulz,
USN, RETErin SchwartzStephanie and Alan ScrimeLoredana and Stephen Scrobe
Secure Operations MonitoringServices Inc
Joyce and William SederburgSally SeekinsVirginia SeidelSelect-Harvest U.S.A. LLCChristine SemeniukSam SewellCheryl SgrignariSurekha and Nrupendrarai ShahShari ShapeHorace ShawMaureen SheehanJoAnn and W. SheehanSharon SheesleyRuth SheidlowerJ. Mark SherockEugene ShifrinPamela ShoffSarah ShortCarol and Norman ShubertE. Chandler ShumateChristos Sidiropoulos, MDSheila and Arthur SiederJean SiegelRadienne and Frank SikorskiGerald SilbermanSusan SilverDeborah SilverbergRonald SilvertonDon Simon Arlene and Charles SimpsonSue and Steven SimringJamie and Dave SirkinLynne and Terry SklarAmanda SleeperLaurie and Rick SleeperBarbara SmithBrian Smith
Mr. and Mrs. David SmithCarol Anderson Smith and
Frederick SmithGeorgia SmithJudith SmithMimi SmithPatricia and Willard SmithSusan Smith-ManningGail and Jeffrey SmoulderCourtney SneathAnne and Don SniderKim SnyderThomas SofianidesPaula SogardNancy and Steve SohnMaria and Mauricio SolisTraci SonsTara and Chris SorleySouth Puget Sound
Neurology, PLLCJoey SpeckerVirginia and Robert SpencerMoshe SpetnerMary StachuraLindsay StaffordMary StamatisKaren and Eric StarkTaisiya and Dimitry StarominskyCharles StegenAnita SteinJudy and Edgar SteinEleanor and Joel SteinbergJill and Jon SteinbergLaura Harrington and
Irving SteinfinkRemy SteinfinkLezah and Ronald StengerBettie and Charles Stephens
Rebecca StevesMarta Stoeckel-Rogers and
Tim RogersCharlene StoltenhoffSandra StonehamJohn StonerJane StrangeRoberta StrasburgKaren StricklandShannon StruthersAnn StuetzerArlene SturmDennis SundheimJudith and Douglas SwagerPeggy and Jim SwartchildAnn and Michael SwartzLee SweetlandEdward SwellGay SwensonRenee SwitzerAnne and Ronald SwitzerFrank SzczerbaMelissa SzczerbaJanice and William SzymanskiMarilyn and Jeffrey TabakBrianna TabilShaunna TafelskiMs. Mary TapperSusan TateAdam TattelbaumBeatrice and Nathan
TaubenfeldTaurus Financial Services, Inc.Joanne TaxFreda and Danny TaylorJacqueline TaylorTeam Anna’s Bananas/
Cincinnati Dystonia Zoo Walk
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Team Arya’s Red Hot Chili Steppers/Cincinnati Dystonia Zoo Walk
Team Baby Sharks/San Diego Dystonia Zoo Day
Team Champion/Fresno Dystonia Zoo Walk
Team Cincinnati Children’s Hospital Medical Center/Cincinnati Dystonia Zoo Walk
Team Cornell/Bronx Dystonia Zoo Walk
Team Cris/Fresno Dystonia Zoo Walk
Team Dave’s Co-Pilots/St. Louis Dystonia Zoo Walk
Team Dinos for Dystonia: Making Dystonia ExtinctPhoenix Dystonia Zoo Day
Team Dys-won’t-ia/San DiegoDystonia Zoo Day
Team Extreme Attitude/Pittsburgh Dystonia Zoo Walk
Team Hope for a Cure/Twin Cities Dystonia Zoo Walk
Team Jefferson/Philadelphia Dystonia Zoo Walk
Team Jens walkers 4 hope/Cincinnati Dystonia Zoo Walk
Team Kayla/Cincinnati DystoniaZoo Walk
Team Laurie’s Luck/Bronx Dystonia Zoo Walk
Team Mandi/Providence Dystonia Zoo Walk
Team Missy’s Keep Your Eye On The Prize/Detroit DystoniaZoo Walk
Team MJ/Phoenix Dystonia Zoo Day
Team Mountain Climbers/Phoenix Dystonia Zoo Day
Team Movers & Shakers/Phoenix Dystonia Zoo Day
Team Moving Disorderly/Twin Cities Dystonia Zoo Walk
Team Muck Family/Pittsburgh Dystonia Zoo Walk
Team Penn/Philadelphia Dystonia Zoo Walk
Team Reno/Providence Dystonia Zoo Walk
Team Rick and Friends/Pittsburgh Dystonia Zoo Walk
Team Seismic Activity/Twin Cities Dystonia Zoo Walk
Team Southwest Synapse American Association of Neuroscience Nurses/Phoenix Dystonia Zoo Day
Team Tall Drinks of Water/Phoenix Dystonia Zoo Day
Team TD4Life/Bronx Dystonia Zoo Walk
Team Twitchy/Twin Cities Dystonia Zoo Walk
Team UMN Nerds/Twin Cities Dystonia Zoo Walk
Joan TenhundfeldBeth Thayer and Katie ThayerDebra and Jeff ThomasJoan and Paul ThomasRoy and Rebecca ThomasBetty ThomsonDonna and Harold ThorpJanice and Richard TillisElizabeth Tillson
William TinklepaughJohn ToffefsonEamon ToneyMarie Torres PerezBarbara and Thomas TragerMollie and Ken TraubCarol and Clifford TrentonShirley TrettenbachJune TritleyAnita Ann TrudellNatalie TrunzoJane TuckerTuesday at Ten Bible StudyKaren and John TuozzoloWendy and Jeffrey TurkAnthony TurnerLinda TuttleCarol and Douglas TwedtPauline and Irvin TysonCarol UlrichUnited Methodist Women
Christ United Methodist ChurchUnited Way of Greater PortlandUnited Way of Rhode IslandUnited Way of Rockland
County, Inc.Valley of The Sun United WayRuth VanderburghStacy and Erik Van GuntenMaura VanNessVirginia Van WagenenMarla and Jeff VaughnMiodrag Velickovic, MDShanthi and Prabaker
VenkatachalamMelissa and Art VercilloConnie VickCarol Vigil
Joanne VolponiWilliam Von HegelEllen Wagner and Jim
CavagnaroJames WagnerAnnette WaiteJoanne and Samuel WalkerEmily Walker-RobbinsEmily Walker-Robbins/C.O.
Pigs in Space BBQ Team Ladies
Lisa WalterEileen and James WarburtonLinda WarrenIrvina and Sherwyn WarrenBarbara WarrickElizabeth WatsonLouanne WatsonShannon WatsonElizabeth WebbGail WebbAnne and Randy WebberMarilyn and Frederick WegnerSarah and Paul WegnerDiana WehnerEzra-Habonim The Niles
Township Jewish Congregation
Dana and Jon WeinbachKaren and Edward WeinbergRobin WeintraubAndrea WeisbrotJenifer WeismanJill and Arnold WeissGail and Gerald WellsNicole and Perry WellsWells Fargo Clearing
Services, LLCSusan Wensel
Judith and Alan WertheimerKimberly WestPamela and Gary WheatleyKatherine Bryan White and
Justin WhiteCourtney and Kay WhitlockCatherine WielandShirley WilkinsonMonika WillgingBrian and James WillistonLesley and Raleigh WillsonMary Ann WilsonZulma and Jake WilsonCharles WilsterAlice WiltshireLeslye WinslowRick WinslowWintrust BankJill Fink and Jerry WiseSheila and Steven WolfAnn WolffJulie and Bruce WoolfNancy and Jeff WorthingtonMarcus WoskGrace and Steve WuCarol WyattJo WyethEdward WynneKim WynneTerri and Steve WynneAmit and Henry YaffeGail and Morris YamnerLaurie and Gary YarnellOma YearyDebra YoungRosemary and Edward YoungJulie YoungLaurie and William Young\Joni and Michael Zavis
Khalil ZewahrehElizabeth ZimmermannKurt ZimmermannAlana Zinn and Jeremy BeydaSara Beth ZivitzKatie ZlotnickMarie ZuidemaBonita and Michael Zurek
Pictured on the cover: US Congresswoman Jan Schakowsky and MikeCahall, the Sorley Family,Ginny Bryan, MarilynneHerbert and Mayor EstherManheimer, and AasefShaikh MD, PhD.
DYSTONIA MEDICAL RESEARCH FOUNDATIONOne East Wacker Drive, Suite 1730
Phone 312.755.0198 • Toll-Free 800.377.DYST (3978)www.dystonia-foundation.org
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