Dysto nia is aJourney

2018 ANNUAL REPORT Message from leadership Dystonia is more than a diagnosis in a medical record. It is a life-changing We suffered a difficult loss in 2018 with the death of Co-Founder and journey, not only for those affected but for the entire family. Your support Chairman Samuel Belzberg. His wise guidance and tenacious enthusiasm of the Dystonia Medical Research Foundation (DMRF) ensures that no one for pursuing our mission are sorely missed. Yet his legacy continues. The has to face this journey alone. For nearly 45 years, DMRF has supported strength of the DMRF and the undeniable impact the Foundation has had people through the dystonia experience while advocating on their behalf on dystonia research and patient resources is a testament to Sam’s vision and stimulating medical research to improve lives. and the unconditional commitment he and Frances Belzberg made to the dystonia community. We are grateful Fran agreed to step into the role of The DMRF’s mission to cure dystonia is also a journey. The organization Honorary Chair, and the Board of Directors is as determined as ever to has evolved dramatically since its founding in 1976. The promise to find a fulfill the promise of a cure. cure has not wavered, and we continue to transcend the many obstacles Our progress in 2018 simply would not be possible without your support. between our vision and the cure, including limitations in funding and the in - Every accomplishment highlighted in this report was possible because of herent unpredictability of science. The re - you . Thank you for being a part of the DMRF’s global effort to find a cure. markable expansion of dystonia research and flow of medical Sincerely, advancements prove our approach is working, and we continue to be inspired Art Kessler Janet L. by the constant progress. President Executive Director

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. 2 Mission The mission of the Dystonia Medical Research Foundation (DMRF) is to advance research for more effective Sam’s impact on dystonia treatments and ultimately a cure, to promote awareness and education, and to support the well-being of research and those affected affected individuals and families. by it was immeasurable. He literally kick-started the field of dystonia research. About dystonia Through his determination to unravel this mystery, he Dystonia is a neurological disorder that causes excessive, involuntary muscle contractions. These involuntary contractions force the body and limbs into abnormal movements and awkward postures. Dystonia may affect inspired countless others to a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and tackle it. Like so many of us, children of all ages and backgrounds. Estimates suggest no fewer than 250,000 people in the United States Sam never accepted defeat are affected. Dystonia causes varying degrees of disability and to dystonia. Our dystonia pain, from mild to severe. Although treatments exist, dystonia family lost a great crusader, remains a chronic disorder for which there is not yet a cure. but his legacy will live on and we won’t let him down. —Art Kessler, DMRF President, on the passing of Co-Founder & Chairman Samuel Belzberg 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.

3 Making great s trides for dyston ia r esearch

15 DYSTONIA RESEARCH Neuroanatomical Substrates for Disrupted Tremor, Oscillations, Synaptic Plasticity, INVESTIGATIONS ADVANCED eIF2alpha Signaling in Dystonia and DBS for Dystonia Nicole Calakos, MD, PhD William Hutchison, PhD CUTTING EDGE SCIENTIFIC WORK. Duke University (USA) Toronto Western Hospital (Canada) Since 1976, DMRF has funded hundreds Supported by Dystonia Medical Research Myoclonus-Dystonia, a Study of Motor Foundation Canada of research investigations, each one an and Non-Motor Symptoms: Is there a Role investment in expanding the dystonia for Serotonin? Determining the Role of Torsin in Nuclear Marina A.J. de Koning-Tijssen, MD, PhD Pore Complex Assembly field and pushing closer to a cure. University of Groningen (The Netherlands) Patrick Lusk, PhD, Yale University (USA) In 2018, DMRF-funded investigators Supported by the Brown Family Foundation Supported in part by Dystonia Medical Research Foundation Canada pursued bold new treatment strategies, Machine Learning Guided Deep Brain Synaptic Plasticity in a Mouse Model of explored dystonia brain chemistry, Stimulation to Cure Neurological Disease Paroxysmal Dystonia Jesse Goldberg, MD, PhD examined non-motor aspects of dystonia, Alexandra Nelson, MD, PhD Cornell University (USA) University of California, San Francisco (USA) and embarked on clinical studies to Supported by the Dorothy Feiss Scientific and Medical Research Fund improve diagnosis and treatment. An International Study to Investigate the Non-Motor and Psychological Impact of Striatal Neuron Activity Patterns in Dystonia Myoclonus-Dystonia Ellen Hess, PhD Kathryn Peall, MD Emory University (USA) Cardiff University (United Kingdom) Supported by the Brown Family Foundation

4 Investigation of Striato-Pallidal Connections Identification of Neuronal Mechanisms of in a Mouse Model of DYT1 Dystonia Agency in Myoclonus-Dystonia Giuseppe Sciamanna, PhD Yulia Worbe, MD, PhD University of Rome tor Vergata (Italy) Pitié-Salpêtrière Hospital (France) Dystonia is one of the network Supported by the Brown Family Foundation disorders, and I’m trying to understand Integrative Network and its Proprioceptive how different nodes of the network Modulation to Probe Physiology and Therapy James C. Kilik Memorial talk to each other and how we can of Cervical Dystonia Research Awards modulate the network in a counter- Aasef Shaikh, MD, PhD Modulating the Functional Connectivity intuitive way. If something is broken, Case Western Reserve University (USA) of the Cerebellum in Musician’s Dystonia we don’t focus on what is broken. Supported by the Estate of Jocelyn Baker Robert Chen, MD, PhD We make up for what is broken with Toronto Western Hospital Dystonia-associated Endoplasmic something that is working. —Aasef Shaikh, MD, PhD, Reticulum Defects and the (De)regulation A Study to Identify Kinematic and Force DMRF Grant Recipient & Past Clinical Fellow of Neurotransmission Measures Capturing Impairment in Patrik Verstreken, PhD Musician’s Dystonia among String Players VIB Leuven (Belgium) and Improvement with Retraining Therapy Three-Dimensional Network Architecture Christine Kim, MD of Dystonia Columbia University An Vo, PhD The Feinstein Institute for Medical Research (USA)

5 4 YOUNG DYSTONIA INVESTIGATORS RECEIVED RESEARCH FELLOWSHIPS.

Dystonia research requires a constant Barbara Oliver Memorial Dystonia CRISPR/Cas9 System Targeting Specific DYT1 flow of new people and new ideas. Research Award Allele Mutation in Patient Induced Pluripotent DMRF provides funding opportunities Using the Nematode Caenorhabditis Stem Cells (iPSCs): A Strategy for Phenotype elegans to Identify Candidate Substrates Reversion in iPSCs-Derived Neurons for young investigators, at strategic for OOC-5/TorsinA Lilian Cruz, PhD stages in a research career, designed Gabriela Huelgas-Morales, PhD Massachusetts General Hospital (USA) to help foster the next generation University of Minnesota Mentors: Xandra Breakefield, PhD Mentor: David Greenstein, PhD & Cris Bragg, PhD of dystonia innovators.

Role of the X-linked Dystonia Parkinsonism A Genetic Approach towards Identifying (XDP) Causative Gene TAF1 in the Striatal Torsin Function in Relation to DYT1 Dystonia Development and Maintenance Anthony Rampello, PhD, Yale University Maria Daniela Cirnaru, PhD Mentor: Christian Schlieker, PhD Mount Sinai Beth Israel (USA) Supported by the family of Barbara Mentor: Michelle Ehrlich, MD and Ron Oliver.

Mahlon DeLong Young Investigator Award recipient Aloysius Domingo, MD was invited to present at the annual Medical & Scientific Advisory Council meeting. Pictured with MSAC Member Kristina Simonyan, MD, PhD, Dr. med.

6 DMRF LEADERSHIP MET WITH NINDS TO IDENTIFY A NEW SECTION OF THE DMRF WEBSITE OPPORTUNITIES FOR DYSTONIA RESEARCH. CENTRALIZED RESOURCES FOR INVESTIGATORS.

“Defining Emergent Opportunities in Dystonia Research” was the title of a meeting organized by The DMRF’s support of dystonia investigators is the National Institute of Neurological Disorders & Stroke (NINDS), beyond financial. The DMRF also prioritizes curating October 29 –30, 2018, in Bethesda, Maryland. The meeting tools and resources to help dystonia investigators do convened world renowned dystonia experts and brought increased visibility of dystonia to a critical federal medical research agency. their important work. A new section on the DMRF Director of NINDS, Walter J. Koroshetz, MD, opened the meeting website added in 2018 includes links to information which was co-chaired by Laurie Ozelius, PhD of Harvard Medical about animal models, cell lines, biosamples, and School and David G. Standaert, MD, PhD of University of Alabama additional resources. at Birmingham. DMRF Chief Scientific Advisor Jan Teller, MA, PhD was among the presenters.

The program agenda included a detailed review of advancements in dystonia research and discussion of future research priorities.

7 5 CLINICAL FELLOWS RECEIVED EXPERT TRAINING TO QUICKEN DYSTONIA DIAGNOSIS AND TREATMENT. Evaluation by a movement disorder specialist CLINICAL FELLOWS AND MENTORS ACTIVE IN 2018 INCLUDED: can have a dramatic impact on quickening • Noreen Bukhari-Parlakturk, MD, PhD – Duke University (2018 –2019) dystonia diagnosis time, increasing treatment Mentor: Nicole Calakos, MD, PhD options, and maximizing outcomes from treatment . Research: Using transcranial magnetic stimulation (TMS) in patients with writer’s cramp (focal hand Many patients throughout the country must dystonia) to reduce dystonic movements. travel significant distance and/or endure long waits for appointment openings to access a • Avram Fraint, MD – Rush University Medical Center (2017 –2018) physician with the necessary qualifications to Mentor: Cynthia Comella, MD diagnose and treat dystonia. In response to the Research: Feasibility, reliability, and satisfaction of post-botulinum toxin injection telemedicine need for additional clinical experts, the DMRF assessment in patients with cervical dystonia. sponsors one-year clinical fellowships to train second-year fellow physicians in the diagnosis • Christopher Groth, MD – University of Colorado Denver (2017 –2018) and treatment of movement disorders with Mentor: Brian Berman, MD, MS special competence in dystonia. The outstanding Research: Exploring possible correlation between reduced GABA receptor availability in global clinicians who complete training have joined pallidus and susceptibility to developing cervical dystonia. movement disorder programs at prestigious institutions and begun practicing in communities • Shabbir Merchant, MD – National Institute of Neurological Disorders & Stroke (2017 –2018) previously without a dystonia expert. Mentor: Mark Hallett, MD Research: Investigating frequency of anxiety and depression in dopa-responsive dystonia. The Clinical Fellowship Program was funded by grants from the Allergan Foundation and • Lindsey Neimand – Icahn School of Medicine at Mount Sinai (2017 –2018) Merz Pharmaceuticals. Mentor: Rachel Saunders-Pullman, MD, MPH, MS Research: Exploring differences in the pathophysiology of dystonia associated with complex regional pain syndrome compared to organic focal hand dystonia.

8 INVESTIGATORS HAD ACCESS TO DATA AND SAMPLES FOR NEW STUDIES. The Global Dystonia Registry is a community-based research initiative I was fortunate to find a that depends on the DMRF for operational and administrative manage - movement disorder specialist men t. 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. through DMRF. Thank you so much. If it wasn’t for the The Dystonia Brain Collective is another DMRF-led collaborative effort among participating Foundation I would be stuck dystonia organizations. The purpose is to promote brain donation registration in support using a pain clinic with very of research and provide investigators with access to tissue samples. Three brains were little knowledge of dystonia. successfully recovered in 2018. DMRF is deeply grateful to the donors’ families for facilitating —Jason Padden, these invaluable contributions to research. DMRF Supporter

Drs. Christian Schlieker, David Peterson, and Roy Sillitoe were among the guest presenters at the 2018 Medical & Scientific Advisory Council meeting.

9 EXPERTS FROM ACROSS THE GLOBE GATHERED FOR SCIENTIFIC MEETINGS. Research grants awarded by the Foundation along With support from the Brown Family Foundation, the 4th DMRF Myoclonus- Dystonia Workshop took place September 27 –28, 2018 in Paris. The meeting with its dedication to raising public awareness make was chaired by Marina de Koning-Tijssen, MD, PhD of University Medical me truly hopeful that finding a cure for all forms of Center Groningen (The Netherlands) and Marie Vidailhet, MD, PhD of dystonia is possible. Salpêtrière Hospital (France). An international cohort of experts presented —Ed Gewirtz, DMRF Supporter 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-based drug discovery. The workshop was co-chaired by Christian Schlieker, PhD of Yale School of Medicine and Thomas Schwartz, PhD of Massachusetts Institute of Technology. The goal of the meeting was to summarize and discuss recent efforts 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 DMRF workshops 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.

10 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 translational research in the dystonias to find better treatments and a cure. The objectives are to develop a fuller understanding of the many features of dystonia and how they change over time, to develop validated diagnostic strategies and rating tools for diagnosis and monitoring patients in clinical trials, to establish a biorepository where blood and other samples can be stored and distributed for research, to stimulate clinical trials for new treatments, and to promote education and awareness. The DMRF plays an integral role by providing free logistical and planning support for the Coalition as an administrative center, for example managing payments to clinical sites and supporting the renewal grant to the NIH. This has saved the Dystonia Coalition $1.5 million in indirect costs, maximizing funds invested in research.

11 Increasin g awareness & advoc acy

THE 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 as a c ondition eligible for study through the Department of Defense Congressionally Directed Medical Research Programs and to provide the National Institutes of Health with ample funds for the 2019 fiscal year. The DAN also collaborated with like-minded organizations to ensure pre-existing condition protections are not eliminated from federal healthcare policies . The DMRF continued to provide staff support in 2018 to ensure the DAN implemented and achieved the legislative agenda.

The time I spent with the Dystonia Advocacy Network was a tremendous turning point for me. Being with other people who had been through similar experiences made me feel like I wasn’t alone anymore.” —Mike Cahall, DMRF Supporter & DAN Advocate The Douglas Kramer Young Advocate Award recognizes young people who are giving voice to dystonia through advocacy. Recipients in 2018 were Rachael Mathews, Sophia Taylor, and Melissa Rentfrow. Special thanks to the Kramer Family for generously supporting this award.

12 DYSTONIA WAS INCLUDED IN THE DOD CONGRESSIONALLY DIRECTED MEDICAL 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 Congressionally DAN advocates presented Senator Susan Collins Directed Medical Research Programs (CDMRP). Unlike the National Institutes of Health and with a Distinguished Public Service Award to recognize her support of the dystonia community. other 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.

13 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 City Marathon 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 the DMRF. The research they fund changes lives, including mine and my sister’s. This organization changed my life! Carrie Siu Butt, Team DMRF, TCS NYC Marathon

14 Empow eri ng patie nts with info rmat ion & support

50+ SUPPORT GROUPS AND MODERATED ONLINE FORUMS 50,000+ REDUCED ISOLATION AND INCREASED SOCIAL CONNECTION. PEOPLE RECEIVED Feelings of isolation are common among individuals and families impacted by dystonia, and can be INFORMATION & RESOURCES. devastating to physical and emotional health. Social connection and peer support are vital to living well with dystonia. DMRF support groups provide local peer support, offering the opportunity to gathe r The DMRF is here for you when with others who know the challenges of living with dystonia. Online forums provide connection to dystonia turns life upside down. thousands around the country, and around the world. The DMRF volunteer network is also made up of individuals devoted to awareness, fundraising, and/or serving as area contacts. Every member of the DMRF’s Board of Directors is navigating the dystonia journey, either themselves or beside a loved one. We are reminded every day of the urgency of our work Support groups provide a space for those of us with dystonia to share our stories and because we see and feel the impact struggles in a safe and accepting environment. We feel less alone and more understood. of dystonia in our own lives. We become better informed about our treatment choices and walk away with useful We are all on this journey together. information to support us in our journey with dystonia. —Alli Feeley, Founder & Leader of Greater Chicagoland Dystonia Support Group

15 The Central Indiana Dystonia Support Group held its first meeting in 2018.

16 DMRF PROVIDED THOUSANDS OF FREE 8 EDUCATIONAL MEETINGS PROVIDED EDUCATIONAL MATERIALS TO PEOPLE SEEKING THE LATEST INFORMATION FROM TOP EXPERTS. INFORMATION, RESOURCES, AND REASSURANCE. Hurried medical appointments in which physicians have limited Access to accurate information about time with patients are not a conducive space for in-depth learning

about dystonia and the latest clinical advancements. DMRF creates dystonia and treatment options is as vital ng di n fi opportunities for individuals to interact with expert clinicians to living well as access to appropria te

rt po up s and researchers in an educational setting, medical care. Sharing a brochure ab out

with ample time for interactive discussion. d yst onia can be a simple but p owerful

DMRF provided thousands of people with the a ct to inform family members, edu cators,

latest information on living well with dystonia colleagues, an d even strangers about the

by organizing free educational meeting across disorder a n d promote greater awareness.

the country. These meetings also provide

More th an 25 brochures and pamphlets are

opportunities for peer support and social available fo r free mail order or downloa d

connection. Locations included: Albuquerque , from the DMRF website. These materials

Boston, Chicago, Cleveland, Gig Harbor are also distributed through local dystonia support groups, educational meetings, (Washington), Los Angeles , Phoenix, and St Louis. awareness events, and in medical offices. Allergan provided a generous educational grant in support of the meetings.

17 20 + community events PATIENTS, FAMILIES, AND HEALTHCARE INSTITUTIONS UNITED 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, promote awareness, highlight movement disorder programs, and raise urgently needed 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 the Bronx 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.

18 19 Board of Directors Clinical Fellowship Program Committee Samuel Belzberg Jon Davis, Director Susan Bressman, MD, Mount Sinai Beth Israel (1928–2018) Co-Founder John Downey, Director Cynthia Comella, MD, Rush University Medical Center Frances Belzberg Donna Driscoll, Director Mahlon R. DeLong, MD, Emory University School of Medicine Honorary Chairperson & Co-Founder Nancy Harris, Director Stanley Fahn, MD, Columbia University Medical Center Stanley Fahn, MD Hubert Fernandez, MD, Cleveland Clinic Marilynne Herbert, Director Lifetime Honorary Director Mark Hallett, MD, National Institute of Neurological Disorders & Stroke Ronald Hersh, Director Art Kessler Joseph Jankovic, MD, Baylor College of Medicine President Erwin Jackson, PhD, Director Richard A. Lewis, MD Stefanie Jackson, Director Vice President of Science Carole Rawson, Director Dystonia Dialogue Editorial Board Barbara Kessler, Chair Ed Cwalinski Barbara Kessler Liz Rawson, Director Paul Kavanaugh Dee Linde Vice President of Awareness Diane Rudolph, Director & Education Diane Rudolph Paula Schneider Paula Schneider, Director Elizabeth Schultz Todd Spotti Karen K. Ross, PhD Pamela Sloate, JD, Director Vice President of Support Mahlon R. DeLong, MD Rosalie Lewis Scientific Director, ex officio Vice President of Public Policy Billy McLaughlin Dennis Kessler Awareness Ambassador, ex officio Vice President of Development Janet Hieshetter Sandra Weil, Network Liaison Executive Director, ex officio Mark Rudolph, Treasurer

DMRF distributed 110,000+ copies of the Dystonia Dialogue newsletter.

20 Medical & Scientific Advisory Council Mahlon R. DeLong, MD Christian Schlieker, PhD Scientific Director Emory University Yale University The DMRF has been a wonderfu l School of Medicine Thomas Schwartz, PhD community of families who have Jesse Goldberg, MD, PhD Massachusetts Institute of Technology walked the path. We followed those Cornell University Kristina Simonyan, MD, PhD who went before us, and now there Mark Hallett, MD Harvard Medical School National Institute of Neurological are people following us. We pay it Yoland Smith, PhD Disorders & Stroke Emory University forward through the DMRF. Charles Harata, MD, PhD —Diane Rudolph, Peter Strick, PhD University of Iowa University of Pittsburgh DMRF Board of Directors Jill Ostrem, MD Cynthia Comella, MD - ex officio University of California, San Francisco Rush University Medical Center/ Coro Paisán-Ruiz, PhD Dysto nia Study Group Icahn School of Medicine at H.A. Jinnah, MD, PhD - ex officio Mount Sinai Principal Investigator, Dystonia Coalition Alvaro Pascual-Leone, MD, PhD Beth-Anne Sieber, PhD Harvard Medical School Federal Liaison Joel Perlmutter, MD Washington University School of Medicine in St Louis

Community Leadership Council Ginny Bryan Beth S. Farber Karen A. Flanagan James A. Metherell Melissa Phelps Rosemary Young

21 Statement of Activities DYSTONIA MEDICAL RESEARCH FOUNDATION | YEAR ENDING DECEMBER 31, 2018

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. 22 Statement of Financial Position DYSTONIA MEDICAL RESEARCH FOUNDATION | YEAR ENDING DECEMBER 31, 2018

SPECIAL EvENTS 20%

REVENUES

LIABILITIES DONATIONS & GRANTS 80%

SCIENCE ADvOCACY 5% 56%

ADMINISTRATION 6% EXPENSES

MEMBERSHIP & SUPPORT 7% FUNDRAISING 11% AWARENESS & EDUCATION 15%

23 In memoriam THE DMRF WISHES TO ACKNOWLEDGE THE GENEROUS GIFTS RECEIVED IN MEMORY OF THE FOLLOWING: Raymond Adolfson Eroull Buterbaugh Pat Frost Stephanie Kopec Pamela Rowe Peabody Leona Stern Wanda Ahlquist Ray Cahill Irene Galassi Florence Kramer Brent Petri Robert Stover Emma and Donald David Camp Shirley and Harry Richard Kunin Michelle Phelan Jeanette Stremel Ajlony Melissa Ann Centrella Goldberg Harry LaCount Richard Pollack Dick Stuart Louis Amato, Sr. Joy Christensen Dr. George Goldman Melvin Lapham Rajiv Purohit Stephen K. Sverid Robert Amerio Dr. Larry O. Christian Howard Golub Peter Lares Anthony “Tony” Putz John Symonds John F. Anderson Roy Conacher Robert Goodman Beverly Lazerwitz Sylvia Radov Vincent Tabbachino Suzanne Arnold Rose Conroy John Jessee Gossett Steven Lesperance Rosalyn Reese Ann and Larry Teuscher Harriet Ball Janene Conte-Clark Joyce Greenberg Dorris Martin Joann Richardson Sylvia Thall Basya Rochel Bas Joanna Craig Jerry Groner William Dale “WD” Annie Ritsch Norma Jean Thomas Shmuel Hirsh obm Stanley Crosby Alfred Grutman McKeand Roberta Rosenbaum Owen Thompson Eileen Bean David Cullinane Robert Haid Beverly Mellon Lena Rossati Willard “Tommy” David Belsky Marie D’Amore Ellen Hansen Stanley Meltzer Sy Rubak Thompson Samuel Belzberg Rita DeCosta Georga Harrington Joann Miller Jeanne Rudolph Virginia Thrower Romeo Bernard A. J. DeGuio Henrichson Maggy Miller Maria A. Salas Edwin “ET” Torres Ernest Bersami Eulinia “Nini” Bernard Harris Gene Minerva Judy and Jerry Schwartz Joann Turner Bessie Betzelos Del Rosario Christopher Harris Stephanie Montemurro Shirley Schwartz Connie Walter Myrna Billian Donald Dome Harold Haslach Daniel Newmahr Gertrude Shafer Charlotte Weaver Leo E. Boisvert Thomas Driscoll Crawford Hawkins Edna Newman Cheryl Sheldon Susan Pitts (Weiss) Laurel A. Bradley Robert Dufault Gloria Heisdorf Mary O’Brien Sidney Sherrin Ida Larine Williams Shirley Braiman Ed Dye Mary Ann Hohenstein Barbara Oliver James Jacob Showers Sr. James L. Williams Michael Breglia Lorraine Egan Jane Holland Smith Laurie Ornstein Avona Matthew Simmons George Winston Gilpin Willie Robert Brown William Eley James Kazmaier Susan Owens Anita Gail Simon Allan Womac Beverly Brownstein Keith Emerson James C. Kilik Esther Paik-Goodhart David Singer Joann Wyeth Cheryl Brunner Harriett Farber Miriam Kimmelman Nettie Pancik Bruce Slepian James R. Bulmer Shari Farber-Tritt Peter Klassen Janet Parent Sam Slepian Karen Burke Tommy Ford Mary Kolls Aleksandra Passarello Sophia Stanich

24 Thank you 2018 donors $50,000 or More DMRF Western PA Dystonia Farber Family/Basket Bash Timothy Esson $2,500 to $4,999 Louise Chazen Banon Family Allergan Corporation Support Group/Pittsburgh Ipsen Biopharmaceuticals, Inc Betty Fitzpatrick Anonymous Charitable Trust Allergan Foundation Dystonia Zoo Walk Estate of Catherine Theresa Kirk Sara Flohr Barbara and Bruce Austin Macy’s Frances and Samuel Belzberg Dystonia Support & Action Dee Linde/Portland Stephen Gebeloff/ Barrow Neurological Institute Microsoft Giving Campaign Wendy Bloom and Group of Greater Philadelphia/ Dystonia Zoo Walk Dystance4Dystonia Heather Barskaya/ Susan Miller and Daryn Pakcyk Arthur Kessler Southeast Pennsylvania James Metherell/ Jonathan and Joel Goldberg Dystance4Dystonia Mount Sinai Health System Brown Family Foundation Support Group/Philadelphia Dystance4Dystonia/ The Henry and Marilyn Taub Elaine Bridges Hope Nightingale and Cure Dystonia Now Dystonia Zoo Walk Toss for Dystonia Foundation Helen Capparell/ David Ellis Dystonia Medical Research Flanagan Family/Cleveland Martha Murphy/San Diego Heymann-Wolf Foundation Dystance4Dystonia The OneAmerica Foundation Canada Dystonia Zoo Walk Dystonia Zoo Day Humboldt Family Foundation Kristin Cinglie/Wacky 5K Foundation, Inc. Dystonia Study Group/Rush Stefanie and Erwin Jackson, PhD Ruth Nussdorf Joyce Jenereaux for DMRF PayPal, Inc. University Medical Center Carole and Doug Rawson Thomas Ogden Sheila Killham/Dogs4Dystonia Kay and James Cooksey/ Amanda Sleeper/Nashua Family Alliance Foundation Revance Therapeutics Inc. Melissa and Roger Phelps/ Dog Walk Letter Writing Dystance4Dystonia Walk June and Ron Hersh David M. Rudolph Cincinnati Dystonia Zoo Walk Lenore Kramer Mark Daus/X-Treme Apparel Team Billy Mac/Twin Cities Barbara and Dennis Kessler Research Fund Karen Ross, PhD/Symonds Emily and Thomas McNaughton Dominion Foundation Dystonia Zoo Walk Rosalie and Richard Lewis, MD US WorldMeds, LLC Foundation Medtronic, Inc. Florence K. Ferguson and Team DRD DUO/San Diego Merz North America, Inc. Diane and Mark Rudolph Mercantile Adjustment E. Michael Shine Dystonia Zoo Day Janet Nast $10,000 to $24,999 Charles and M.R. Shapiro Bureau, LLC Kathleen and Timothy Flanagan Team Mount Sinai/Bronx Ronald Oliver/Barbara Oliver Anonymous Foundation, Inc. MG O’Neil Foundation Joann Gerardi, PhD/Alexandra Dystonia Zoo Walk Memorial Research Fund Baron Family/Patricia Bono/ Team Flanagan/Cleveland Chong Hui and Terry Neville and Martin Symonds Team Natalie TalentLaunch/ C. Northrop and A. Marder Beth Paolero/Steve Sowka/ Dystonia Zoo Walk Nancy and Bruce Newberg Foundation, Inc. Cleveland Dystonia Zoo Walk Pond Foundation Paula Schneider/Providence June Tritley and Pam Wheatley / Rose and Arthur Perrin Patrick Gutierrez Team Sophia’s Squad/St. Louis Pamela Sloate/Bronx Dystonia Dystonia Zoo Walk St. Louis Dystonia Zoo Walk Abigail Peterson Happy Valley Blended Dystonia Zoo Walk Zoo Walk Chelsi Christman/Sarah Weinberg/Newton Family Marissa Rozenfeld/ Products, LLC Team Sullivan/Providence Team Ali’s ZooGooders/ Ernstberger/Sunshine Fox/ Foundation Dystance4Dystonia Deborah and James Harlow Dystonia Zoo Walk Bronx Dystonia Zoo Walk Hunt for a Cure Rosemary and Edward Young/ Kay and Steve Shraiberg Marilynne Herbert Team The E Team/Portland Sandra Weil Mike Delise/$5Cure4Dystonia Detroit Dystonia Zoo Walk Standard Amusements LLC Janet Hieshetter and Dystonia Zoo Walk Jaime Dimitri/ Arlene and Robert Subin Eric Greenberg Team X-Treme Apparel/ $25,000 to $49,999 Dystance4Dystonia $5,000 to $9,999 Team Braden’s Brigade/ Barbara and Edward Holtvluwer Phoenix Dystonia Zoo Day Anonymous DMRF Central California Nancy and Rick Baer Pittsburgh Dystonia Zoo Walk Hope Research Institute Carrie and Stanley Valiulis Peter Briglia/Joan Miller Young Dystonia Support Group/ Vicki Berman Carole Tordi/ Johnson & Johnson Family Anna Voytovich and Investigator Award Fresno Dystonia Zoo Walk Virginia Bryan/ Dystance4Dystonia of Companies Steven Rudolph Jonathan Davis DMRF Minnesota Dystonia Dystance4Dystonia Walmart Inc. Nancy Kaplan Binbin Wang, MD and DMRF Phoenix, AZ Dystonia Support Group/Twin Cities Drs. Mary and Mahlon DeLong Elaine and Brian Weinberg Kohl’s Department Stores, Inc. Aaron Lewis, MD Support Group/Phoenix Dystonia Zoo Walk The Dorothy and Murray Carol and Larry Weissenberg Jessica Lawler/Stomp Out Dystonia Zoo Day Feiss Foundation Dystonia 25 $1,000 to $2,499 Jan and Charles Davis Jonathan Kovler/Kovler Joyce Sederburg/Dogs for Team Dystonia Muse/Bronx Nancy and Bruce Thayer Anonymous Linda Davis/Medford Chamber Family Foundation Dystonia Virtual Dog Walk Dystonia Zoo Walk Hillary and Brett Thomas Anonymous of Commerce Awareness William Lares/Big D.A.M.N. Mr. and Mrs. Jeffrey Sherrin Team Gestrich Dream Team/ Susan Thomas Anonymous Concert Metal Show Sylvia and Donald Simon Pittsburgh Dystonia Zoo Walk Jean and Dan Thompson Susan and Marino Aguilera Janet and Roger DeBard/ Barbara and Harry Lehr Eric Slaasted Team Huser/Cincinnati Turner Construction Company Allegheny Health Network DeBard Johnson Foundation Tricia and Brian Lewis Pamela Sloate/The Martin & Dystonia Zoo Walk University of Pittsburgh AllianceBernstein DMRF South Carolina Regla Lichy Roberta Sloate Dystonia Team Joanna/Philadelphia Medical Center (UPMC) Sandy and Wes Alumbaugh Support Group Jeffrey Lipsett and Lisa Tabak Research Fund Dystonia Zoo Walk Jean and John Walter Amazon.com Ann and Bryce Durant Robin and Bud London Judy Soley Team Kathy’s Krusaders/Twin Daniel Weinberg Ameriprise Financial Employee Sally and Maynard Engel Allison and Dan London Mary Specker Stone and Cities Dystonia Zoo Walk Sherri and Mark Weinman Gift Matching Program Fáilte Ireland Jane Marks John Stone Team Kavin/Detroit Dystonia Sally Weinman Margie Anik, MS, CCC Marilyn Fedak Charles Menges Carole and Joel Steiger/A.L. Zoo Walk Jacqueline and James Cerqua/ Elaine and Robert Baer Beverly and Richard Fitzgerald Suzanne and Brendan Mulshine Levine Family Foundation, Inc. Team LuLu/Fresno Dystonia West Winds Cafe &Catering ,Inc. Mary Ann and Richard Baker Barbara and Richard Gay Michael Nimocks Patricia Swanson and Zoo Walk Linda and David Westfall Lisa and Mark Barbadora Denise and Bill Gibson Henry Nissley Ivan Clatanoff Team Mac Attack/Phoenix Mary J. B. Work Fund of the DeAnne and Dan Bean Caren and Larry Goodman Northwell Health/Feinstein TalentLaunch Dystonia Zoo Day Community Foundation Jennifer and Michael Beaury Google, Inc. Institute For Medical Research Arlene and Joseph Taub Team Marching for Marianne/ Patricia and W. Dan Wright Howard Berman Bernice and Sam Greenberg Novi Surgery Center, LLC Foundation Cincinnati Dystonia Zoo Walk Allison Botti/Dystance4Dystonia Joshua Hecht Cheryl and Michael O’Brien Team A Twist of Ed/ Team Montefiore Neurology/ $500 to $999 Diane Brandt Henry Ford Neuroscience Fredelle and Martin Ohlhausen Pittsburgh Dystonia Zoo Walk Bronx Dystonia Zoo Walk Anonymous Jeffrey Brodsky, PhD Institute Lori and Joel Oxman, PhD Team Annie/Philadelphia Team Movers & Shakers 2018/ Mary Jo Abbott Joe Brown Robert Herkenhoff Bharti and Raman Patel Dystonia Zoo Walk Twin Cities Dystonia Zoo Walk Abbott Judith and Richard Bryan The Hershey Company The Pittsburgh Foundation Team Blueberry/Phoenix Team Olivia & Madison/ Dr. Ellen Air Lisette Bunting-Perry,RN, MScN Maureen and Raymond Hiller Marvin Rabbiner Dystonia Zoo Day Cincinnati Dystonia Zoo Walk Emily Algier/Dogs for Dystonia Car-O-Liner Company Glenard Hohenstein Lisa and Daniel Rabe Team Cappio/Bronx Dystonia Team Omar/Bronx Dystonia Virtual Dog Walk Maria Carrera and Mary Hurley Morton Kathryn Re Zoo Walk Zoo Walk Douglas Almoney Corey Fayman and Gregory Morton Krista and Ronald Reed Team Chicken Wing... Ain’t No Team Rachel/Detroit Dystonia Archways McDonald’s Michele Carruozzo Susan and Jim Huser Brock Renner Thing/Philadelphia Dystonia Zoo Walk Felice Axelrod R. Barry Casler Independent Charities Leslie Richman Zoo Walk Team Riverhills/Cincinnati Rita and Guido Battaglini/ Terri and Charles Chapman of America Riverhills Neuroscience Team Columbia University/ Dystonia Zoo Walk Brigantine Beach Clean Up Tracy and Harlan Cherniak Julie and Ed Irvin, Jr. Susan and Eric Robinson Bronx Dystonia Zoo Walk Team Rolling Stones/Phoenix B-Dale Club, Inc. Chipotle Mexican Grill Susan Joseph Debra Ronning/Elizabethtown Team Cronin/Bronx Dystonia Dystonia Zoo Day Dana Beatty Dale and Peter Claman Barbara and Ronnie Kahn College Zoo Walk Team SEP Dystonia Support Patricia Biedess Sheila Clark Un Jung Kang, MD Victoria and Bruce Rosenthal Team Dawn & Emily/Philadelphia Group/Philadelphia Dystonia Bloomberg LP Mary Clark Janis Nancy and Alan Kessler Rubens Family Foundation Dystonia Zoo Walk Zoo Walk Todd Bofinger/Billy McLaughlin Laura Cobb Deborah Kilpatrick, PhD Tammy and Robert Sanders Team Dee/Portland Dystonia Team Twisted Troops/ Tribute Chris Collins and Kacey Fitzpatrick Susan Saril Zoo Walk Pittsburgh Dystonia Zoo Walk Michelle and Chuck Kay and James Cooksey Ellen and Ronald Kisner Lauren Schleyer Team Dystonia Dynamos/ Team Voice of Hope/San Diego Breitsprecher/Billy Dr. Kenneth Davidson San Diego Dystonia Zoo Day Dystonia Zoo Day McLaughlin Tribute

26 Connie Brown Kenneth Flynn Timothy Keegan National Fuel Gas Company Societe Generale Employee Team Meltons & Friends/ Kristen Brown Anita Ford Isabel and Harvey Kibel Foundation Charitable Gift Matching Bronx Dystonia Zoo Walk Donna Bunten Mr. and Mrs. J.M. Fox Lori Kilty Christi Neese Program Team MGC Supports DMRF/ Drs. LuAnnette and John Butler Fraternal Order of Police - Laura King New Directions Foundation St. Elizabeth Hospital Cincinnati Dystonia Zoo Walk Kay and Ronald Cabay, DDS Northern Nevada Lodge #8 Kristina Kittilsen and North Jersey Brain & Ronna Stamm and Paul Lehman Team Monroe/St. Louis Lisa and Stephen Cartolano Nilda Fumuso Steve Weller Spine Center The Goldie Anna Charitable Dystonia Zoo Walk CentraState Healthcare Lois and Norman Gebeloff Melanie and Randolph Kraft Michael Novak Trust Team Nicko/Cincinnati Foundation Stephen Gebeloff Lori and Jimmy Krantz John Nyikos Scott Stevens Dystonia Zoo Walk Linda and Harold Chizewer John Gentry Gail Lande NYU Langone Medical Center Bonnie and Tom Strauss Team Paula’s Team/Providence Ciminelli Real Estates Services Penny and Mark Gillette Jeanne Lavana Christina and Jeremiah Donna and Glen Suiter Dystonia Zoo Walk Kristin Cinglie and Vicki and Ernie Ginter, Jr. Miles Lazerwitz, DDS O’Connor Cindy and James Tanner Team Poetry In Motion/ Paul Ivankovics Carol and Peter Goldman Lucy and Kenneth Lehman Stacey and Mark Overton Team #carsonstrong/ Philadelphia Dystonia Cleveland Clinic Jennifer and Seth Goldman Meryl and Joseph Levin Amy and Bruce Paul Cincinnati Dystonia Zoo Walk Zoo Walk Susan and Howard Code Melissa Greenberg/Dogs for Arthur Levine Gloria and Ron Petri Team Becky D’s Superstars/ Team Reese’s Pieces/St. Louis Kristin and Charlie Collier Dystonia Virtual Dog Walk Elaine and Shaul Levy Joan and James Piedmonte Phoenix Dystonia Zoo Day Dystonia Zoo Walk Constellation Energy Group/ Andrea and Robert Greene LS Interiors Group, Inc. Patrice and Jeffrey Pierce Team Big Tall Guy/Pittsburgh Team Reno/Providence Exelon Foundation Diane and David Grossman Lubeck Community Baptist Pittsburgh Pirates Dystonia Zoo Walk Dystonia Zoo Walk Shirley Cooper Guggenheim Church Margaret Powell Team Cappolla/Bronx Dystonia Team Robin’s Nest/Bronx Diddy and John Cullinane Martin Gutenplan Carol and Edward Maier Nancy and Larry Present Zoo Walk Dystonia Zoo Walk Donna Dant Judy and Geoffrey Handler Margaret McCulla David Preston Team Cookie Angel/Cleveland Team Scotty and Quintyn/ Barclay and Richard Darden Hartford Healthcare Medical Emily Riggs McNaughton/Dogs Carol and David Purdy Dystonia Zoo Walk St. Louis Dystonia Zoo Walk Caroline Davidson Group for Dystonia Virtual Dog Walk David Ramirez Team Cyborgs/Philadelphia Team Tilted Theisens/Twin Carol and Joel Davis Denise and Stephen Harwood Arlene Meintz Brenda and Charles Reavis Dystonia Zoo Walk Cities Dystonia Zoo Walk Sandra and Donald De Ciccio Jerome Heisdorf Wayne Mellon David Rich Team Daphne/Portland Team Twisted Sister/Detroit Julie DeLaurenti/Dogs for Stacey Henderson Debbi and Steve Melzer Beverly Rogers Dystonia Zoo Walk Dystonia Zoo Walk Dystonia Virtual Dog Walk Janet Hieshetter/Dogs for Cindy and Thomas Metherell Roisen Family Foundation, Inc. Team DeAnne/Portland Team Twisted Sisters/St. Louis Julie DeLaurenti Dystonia Virtual Dog Walk Lillian and Andrew Meyers Ralph Rose Dystonia Zoo Walk Dystonia Zoo Walk Mark Donovan Coral Hilby, MD Marcy Zinn and John Miller Maxine and Gerald Rosen Team Debbi’s Tribe/Philadelphia Team Vicki Glicken/Cleveland E & B Paving, Inc. Joyce Hirsch Nan and Howard Miller Sample Czar Dystonia Zoo Walk Dystonia Zoo Walk East River Energy, Inc. Patrick Hogan, III, DO Miller Cooper & CO. LTD. Carol and Ken Schwartz Team Flamingo King/ Travelers Community Marcia and Richard Eisenberg Teresa and Ronald Horton Charitable Foundation Charlene and Howard Schwartz Philadelphia Dystonia Connections Elizabethtown College Andrea Incropera Kelli and Marc Montanaro Maria Scutaro and Terry Mullen Zoo Walk Linda Troy Ellex iScience, Inc. Interpretations Dance Academy Montefiore Medical Center/ Marisa and Tomer Seifan Team In Memory of Marshall Laura Tubridy Brenda and Lee Moss/ Investors Foundation, Inc Department of Neurology Patricia and Howard Self R. Isaacs/Philadelphia Amy Tutrone The Erdle Foundation, Inc. Jeffrey James Insurance Vicki and Steven Morris Lynn and Jim Shaffer Dystonia Zoo Walk UBS Employee Giving Program Sally and Michael Ernstberger Group LLC Germaine J. Mulhern CPA Arielle and Philip Sherrill Team Kumon for Adina/ United Shore Doris and Stephen Faber Pam Kampf Deborah and Robert Myman Mitchell Slepian Cleveland Dystonia Zoo Walk United Way of Greater Joel Farber Susan and Daniel Kasten Janice and Len Nachbar Margaret and Thomas Smith Team Maglio/Philadelphia Capital Region Rhona and Leonard Feigenbaum Wendy and Leonard Kaye Zita Nathans Dystonia Zoo Walk Roberta and Arnie Ursaner

27 Verona Liquor License LLC Antoine Babule Lisa Breedveld Debbie Durrer and The Goat Farm Petroleum Gail and Mark Kelley Julia Vollman Kim Bang Carole and John Brigham Richard Fantozzi Terminal Richard Kelsch Jeanne and Patrick Walker Dr. and Mrs. Irving Baras Brooks Construction LLC Anne Nathans Eddy and Gail and Donald Goldstein Kemper House Mr. and Mrs. Milton Warsaw Baron Family/Dogs for Karen Brown William Eddy Patricia Gollmer Katie Kildea The Wawa Foundation Dystonia Virtual Dog Walk Mary Brown Isabel and Harry Edwards Rita Golub Cheryl Killham Julie and David Weisman Phyllis Bass Bernard Brownstein Elite Sports Center Ronald Greenberg Rae and Evan Klein Leona Weiss McCargar and Alexandra and Michael Bassik Bernice Bryan Betty Ellerin Mr. and Mrs. John Griswold Margaret Knapp Scott McCargar Mary Ellen and Michael Rebecca Burns Margaret and Leon Ellin Aaron Grossman Norie Knezetic/K Creative West Virginia Central Federal Battipaglia Cardinal USA Fuel Oil Andrea Elliott/Dogs for Nancy Gutierrez Group, Inc. Credit Union Judy and Ted Baumhauer Edward Carnvale, DPM Dystonia Virtual Dog Walk The H Group, Inc Susan and Matthew Knight Whole Foods Market Lucy and Ellie Beasley/Dogs Neelam Chand David Ellis Maryam Haghbin and Knot Marine Susan and David Williamson for Dystonia Virtual Dog Walk Chapter 3 Copyediting LLC Dorothy and Edward Engelken Ehsan Shahmir, MD Cassandra Kopec Karen Winter Christine and Jay Beattie Elizabeth and John Chidsey Cynthia and J. Michael Erdey Michael Halberstam Andrea Kovach Wolverine Packing Company BelaCoop Animal Hospital Chodorcoff Family Fund of the Janet Fairbank Dana Hallenbeck George Kramer Mary Ann Womac of North Park Community Foundation of Anna Faraguna Anne Hanford Krebs Chrysler Dodge Saundra and Marvin Zessar Stuart Bell New Jersey Jeris and John Ferguson Delores and Gordon Hansen Jeep Ram Elizabeth Zimmerman Anne and Robert Bencks Joyce and Kim Cinglie Julie Fire Elizabeth Harris Kumon of Strongsville Donaldson and Jeffrey Erica Bender City of Brigantine First Presbyterian Church Harriet Hartstein Marlene & Jo-Anne Kunin Donaldson, MD Jo and Larry Benesi Yvette Clapp at Caldwell Cynthia and Norman Harwell Philanthropic Fund - Jewish Patricia Ziner Patricia and Andrew Beran Andrea Claussen Susan Fishbain Lauren and Marc Hausman Community Foundation Berco Tank, LLC Cathleen Cohen Ann and George Fisher Brian Hays Susan and Howard Lasky $250 to $499 Meredith Berkman Stephanie Colegrove Gale and Tim Flanagan Michael Herko Michelle and Norman Lattman Ronald Abel Meredith Berkman and Jennifer and Paul Colone Carol and Luther Flynn Hermes Sports & Events Mark LeDoux, MD, PhD ACES Daniel Mintz The Community College of Julie and Steven Forney Paula Hoogerland Kasey and Todd Leinbach Acorda Therapeutics, Inc. Linda Berman and Rhode Island Robert Francis Scott Hopping Lenny’s Bar Aetna Foundation, Inc. Paul Abramson James B. Conway Rebecca Freligh Nancy and Jack Howie Leonard & Sons Complete Akers Chiropractic Clinic Big Tree Fitness LLC Laura Crawley Louis French Elaine Igelman Car Care Freyda and Jeffrey Albin Ann Bikales Carolyn Cruz Abby and Michael Friedman Timothy Insogna/ACES Susan Levy Alliance Solutions Group/ Scott Bird Elise and Michael Cunningham Angela Garcia Casual Friday Karen and Ben Lewis Cleveland Corporate Melissa Bisagni Cherry Daigle Laurel Garofolo Vanessa and Marc Jacobs Rosealie Liebovich Challenge Anni and Henry Black Deborah and Douglas Darby Jordan and Daniel Gaspar Frank Jansen Douglas Lightbound Alvarado Hospital Esther and Charles Bley Definitive Staffing Solutions, Inc. Robert Gebeloff Jefferson Surgical Center Dee Linde Amy Amendola Barbara and Ronald Borden Marcia and Kenneth Denberg Gladys George and at the Navy Yard Lindsey’s Tumbling School Virginia and Robert Ames Jeri Boyd Carol and David Director Stuart Orsher, MD Gail Jenereaux Judith Lipsett Linda and Dennis Anderson Shirley Bradley Ms. Louis Dodaro and Barbara Gilbert Jerome A. Kaplan and Deena L. Jamie and Gary Litt Apple, Inc. Marjorie Brandenburg Adrienne Sabora Emma and Robert Gilbert Kaplan Family Foundation, Inc. Robert Losik Sandra Aresta and Michael Katz Edward Brandt Douglas Dudgeon Norma Ginsberg Michele Karpovich James Lowery, MD and Sandra Asaro Allison Brashear, MD, MBA Florence Duggan-Bayne Vicki and John Glicken Gail and Robert Katz Dawn Lowery, PhD Joy and Avi Avidan Dunkin Donuts Lisa and Steve Katz Heather and Carl Luepker

28 Andrea and Steven Lurie Alleyne and Edward Patrick Jil and Jordan Schaps Team ALRIGHT ALRIGHT Team Newbold/St. Louis Traci and Jamie Trapp Annette and Michael Lynch Jill Pazolka Margaret Schlegel ALRIGHT/Detroit Dystonia Dystonia Zoo Walk Alecia and Gregory Troy Lindy Makar John Pazolka Donald Schlosser Zoo Walk Team One Step at a Time/ United Way of Greater Debra and Joel Margolis L.A. Perkins Robin and Donald Schober Team Anderson/Bronx Bronx Dystonia Zoo Walk Philadelphia and Southern Maryvale Teachers Association Kathleen and Peter Pflock Gloria and John Schroeder Dystonia Zoo Walk Team One Twisted Sister/ New Jersey Judith and Glenn Mason Russell Phillips Michele Schuster Team Carol’s Curesaders/ Pittsburgh Dystonia Zoo Walk UnityPoint Health Alana and Ricky Max Gail Phipps Kate Schwartz Philadelphia Dystonia Team PAHrtners/Philadelphia University of Iowa Community Shelley and Guy Maynard Physical Therapy Orthopaedic Joan and Arthur Segal, MD Zoo Walk Dystonia Zoo Walk Credit Union Joe Mazzo Specialists, Inc. (PTOSI) Jonathan Sheffer Team Chief Spencer/Phoenix Team Pat/Philadelphia Teresa Vaughan Linda McGlasson Michelle Pinchev Nancy Sheffield Dystonia Zoo Day Dystonia Zoo Walk Deborah Visus Michael McGrath Jane Piro Shell Oil Company Team Cosplay It Forward/ Team Rita’s Roses/Philadelphia Vizmeg Landscape, Inc. Ellen McHugh Laureen Primmer Joyce and Sheldon Silverstein Pittsburgh Dystonia Zoo Walk Dystonia Zoo Walk Erica and Robert Vrabel Suzanne McIntire Maureen Pskowski Rheta Smith Team Felix/Fresno Dystonia Team Sherri/Detroit Dystonia Julie Wagshal James Meade Sally and Ronald Rabinowitz Julie and PJ Solit Zoo Walk Zoo Walk Sharon Wagshal Terry Meek Revance SHARE THE REV Team Joanne and Howard Sorkin Team Hartford HealthCare Team Solstice Sisters/ Martie and Stephen Wartalski Meier Vet Clinic Beth Cliffe Richardson and Steve Sowka Chase Family Movement Philadelphia Dystonia Marilyn and Jerome Wasserman Sharon Menaldino, EdD Harry Richardson St. Philomena School Inc. Disorders Center/Providence Zoo Walk Sandra Wasserman Michael C. Davis, C.P.A., Inc. Laureen Robben/Dogs for Larry Stahl Dystonia Zoo Walk Team SquareHead Brewing/ Lauren and Jeff Waxman Michigan Head and Dystonia Virtual Dog Walk Susan and Murray Steinfink Team Izzy’s Soldiers/Pittsburgh Bronx Dystonia Zoo Walk Diane Webber Spine Institute Rose and Alvin Robins Myra and Jerry Stemerman Dystonia Zoo Walk Team Stoney/Bronx Dystonia Adrian Weigart Barbara and Richard Miller Rogers Middle School Student Barbara Stewart Team Jansen/Cleveland Zoo Walk Roberta and William Millhiser Smith Foundation Council Hike Eleanor and Scott Stoler Dystonia Zoo Walk/Pittsburgh Team Tenacity/Philadelphia Weinsheimer Sally Mitchell Marcia and James Rohrbaugh Ira Straff Dystonia Zoo Walk Dystonia Zoo Walk John Weintraub Carol and Jim Moller Michelle and Marc Rosenbach Laurie Strawgate-Kanefsky, PhD Team Joanna/Philadelphia Team The “B” Squad/ Wells Fargo Advisory Jeans Day David Moltke-Hansen Susan and David Rosner and Paul Kanefsky Esq. Dystonia Zoo Walk Providence Dystonia Zoo Walk Arlene Weltman Reta Moore Carol Rotolo Barb Struchen Team Keagan/Detroit Dystonia Team The Nature of Things - Gail West Nancy K. Pruett, DDS Jill and Randy Roush Rebecca and Collin Stuart Zoo Walk Ms. Deb/Providence Dystonia Lynne and Huntley Whitacre Marilyn and John Newhouse Royal Wire Products Katie Stuart Team Lisa Vrabel/Detroit Zoo Walk Lisa White Gale Nolan Royalton Hills Lions Club Suzanne Stutman and Dystonia Zoo Walk Team Tonya’s Tribe/Cincinnati Cindy and Donald Whiting, MD Barbara Noonan Cynthia and Steven Rozenfeld Jon Wilkenfeld Team LynnMcKayFunderburk- Dystonia Zoo Walk Annette Wilson Colleen and James O’Brien Betty and Edward Rudolph Sunrise Optimist Foundation KuzmaVerduzco/Phoenix Team Yoomie Zoomie/Bronx Diane and Don Wixted Jeanne and John O’Connor Roberta Rudolph Salas and of Freehold Dystonia Zoo Day Dystonia Zoo Walk Scott Wood, Jr Mary and John O’Donnell Javier Salas Michele Tagliati, MD Team Maddy/Detroit Dystonia Team Zooney/Cincinnati Robert Yandt Joan and John O’Rourke Carol Ryan Susan Taylor Zoo Walk Dystonia Zoo Walk Virginia Young Jeffrey Oxman Salon Meraki Team Agony of DeFeet/ Team Marisa/Fresno Dystonia Temple Challenge Holly Youngwood Patricia and John Pace Johan Samanta, MD St. Louis Dystonia Zoo Walk Zoo Walk Grace Thielen Talia Zapolanski Maddie Paolero/Dogs for Malerie Samona Team Allison Dahlstedt/ Team Meehan/Bronx Dystonia Joyce Thielen David Zappitell Dystonia Virtual Dog Walk Susan and Samuel Sandberg Providence Dystonia Zoo Walk Joan Thompson Leah and Jeff Zygler Loren Parsons Pauline Sangiacomo Zoo Walk Susan and Alan Tivoli

29 $100 to $249 Ethel Baker Arlene Bernstein Henra Briskin Dayna Camp Kathleen and John Colesi 4Walls.com, LTD Cindy and Jack Balcolm Marc Berthiuaume Nancy and Loren Broaddus Patricia and Patrick Campbell Diane Collins Peggy and James Abernathy Susan Baldwin and Shirley and Roscoe Beverly Patrick Brogan/ Heidi and Patrick Cappolla Anthony Colucci Beth and Larry Abney Gary Gepner Charles Biener Dystance4Dystonia Robert Cardoza Patricia and Kennie Combs Paige and Dennis Adams Bank of America Charitable Phyllis Bieri Dorothy and Roger Brooks Yvonne and Thomas Carney Commonwealth of Virginia Greta Adler Foundation Angela F. Binda Ann Brown Myra and Robert Carrier Campaign Barbara Adolfson Donna Baran Joanne and Peter Blaauboer Gail Brown John Carroll Community Physical Therapy Agape ABF Heights Church Amy Barkin and Claude Jackson Jill and Barry Blacker Gregory Brown Susan and Paul Carroll and Rehab at Stone’s Brenda Akin Jane Atwood Barlow Frances Blackman Jeffrey Brown Yolanda and Thomas Carroll Crossing Erdal Aksoy Janice Barlow Natalie Blake and Jo-Ann and John Brown Darlene Carruthers Candace Conacher Maria Albanese Susan and Cliff Baron Steven Schwartz Judith Brown Lauren and Ann Carter Mary Conland Emily Algier Catherine Barrie Twila Blankenship Kathleen and Kenneth Brown Annette Catalano Virginia and Vincent Conley Charles Allen Helen and Frank Barry Shirley and James Blue Betsy Brown Braun Jason Cavalieri Mary Conte Angie and Alex Alley Betina Bartlett Rosemarie and David Blum Irene and George Brunner Helena and Sean Cawley Karen and Charles Conway Karen Shoglow-Alvarado and Sister Patricia Bassett Brenda and Mark Blumenthal Debra Bruno-Walk Anthony Cecere Elizabeth Cooney James Alvarado Rita and Guido Battaglini Julie and Jonathan Bobb Laura Bryan Jacqueline and James Cerqua Patricia and Michael Cops Angie and Louis Amato Diana and Kenneth Bauer Chris Bodine Virginia Bryan/Dogs for Toni Chadwell and Sarah Finch Suzanne Amendola Rhonda and James Beane Linda Boeckman Dystonia Virtual Dog Walk Abeldia Champion Costco Wholesale Lorraine and Curt Anastasio Margaret Bearer Denise and David Boente Don Buchal Cheryl and Joseph Champlin Catherine Cote-Verville Ruth Anderson Shannan Beasley Diane Bomgardner Crissie Buckwalter Christopher Chapman Barbara and Martin Cotler Colin Angelotti Sarah Bechtold Donna Boone Mary and Paul Buenger Cynthia Chapman Bruce Cotugno, MD Anonymous David Beck Roberta and Seth Borg Margaret Bulmer Elizabeth Chapman Vivian and Gerald Coutinho Anonymous Kara Beck Jessica Borowick and Todd Bunch/Dogs for Dystonia Lori Cheney Bruce Cowan Anonymous Felicia and Irv Beitler Paul Flach Virtual Dog Walk Stephanie and Steven Cherniak Lindsay Cowan Anonymous Joyce Belchic Matt Bourke Marina and Travus Burch Evelyn and Joseph Choroser Cox Family Pharmacy Carol and Sheldon Appel Diane and Joe Belkevich Phyllis and Thomas Bouthillier Clayton Burns Larry Christensen Cheryl and John Craig Ann Appelbaum Sara and William Belkov Gerald Bowling, MD Kendal Burns/Dogs for Cathy Chuang John Craik Linda Argento Amanda Bell and Barbara Bell Kay Boyd Dystonia Virtual Dog Walk Shirley and LeRoy Chupp Nebra and Jacob Crane Joseph Arlotta Rosemary and Thomas Bellaire Jane and Allen Boyer Suzanne Burton Susan Ciolek Patience Croll Kerry Armstrong Helen and Rick Bemporad Dianne and Marc Braer Tracy Buseman-Carlstrom James Clark, Jr. Rosemary Cronin Judy and Tom Aronson William Benjamin Jessica Bragdon Jennifer Buss Barbara Coats Luann and Larry Croy Arrowhead Lock and Safe, Inc. Susan Bennett Jane Brash Bussey’s Painting, Inc. Miriam and Aaron Cohen Catherine Cullen Bohlman Lora Ashcraft Elyse Benton Sara Brauer Estelle Butts Betsy Cohen William Cummings Buzzy August Zelda and Sol Berger Jean and Lowell Braxton Kathy and David Buyansky Janice and Harold Cohen John Cunningham Marilyn and Craig Ause Rayzella and Frederick Berko Sharon Brello Nancy Byl, PhD, PT Jane Cohen Karen and David Cunningham Mohammad Azad Helaine and Roger Berman Kyle Brennan Ethna and Jim Byrne Lenora Cohen Sheila Cunningham and Deborah and Richard Bailine Jackie and Richard Bernard Norman Brenner Mageen Caines Rocco Colangelo Colleen O’Connell Kristin Bainbridge Joan Bernardino Nicolet Brett Maria and Scott Calderwood Suzanne Henley and John Curry Chris Baker Deborah and Mitchell Brin, MD Tommy Camm James Cole

30 Myrna Curtis Julie Blackman and Barbara Emerson Luisa Fishburn Kathleen and Charles Gass Carole Graves Mary and Edward Curvey Mitchell Dinnerstein Charles Enger Monna and Danny Fisher Susan Gaughan Pamela and Douglas Grayson Custom Biogenic Systems Jeanne and Albert Dipronio Sarah and Charles Enzor Alice Fishman and Lee Gaydos Donald Green Edward Cwalinski Joan and Thomas Dirmyer Nicole and Robert Epplen Michael Dipietro Barry Geisler Jennifer Green Emily, Rosemary and Jacques Caitlin Dittmer Jason Epstein Myrna Fishman Kenneth Gelburd Mary Green Dahlstedt Dorothy Dobos Christine Erlandsen Pamela and Barry Flanagan Jacqueline and Andrew David Greenberg Stacy and Jack Dahlstedt Laurie and Patrick Dodd Michael Erney Therese and Dennis Flanagan Germanow Julie Greene Linda Dale Shaeffer Amy and Ira Dolnick, DDS Irene and Carl Ersing Margaret Flanagan Heather Gerteisen Susan and Adam Greene Megan Daley Nancy Donaldson Carol and Donald Esselman Lynn and Saul Fleer Randal Gestrich June Greenlee Stephen Darmofal Jennifer Donhauser Rebecca Esselman Lisa and Michael Florjancic Donna and Edward Gewirtz Lori and David Greenwald Andrea Darst Erdal Donmez Heidi Evans Edward Foley Randi Gewirtz Thomas Griffo Helen and Charles David Kathleen and James Dooley Jean Evans Fortune Fish & Gourmet Dr. and Mrs. Bruce M. Gilberg Nancy Groom Edith Davidson Aphrodite and John Doran Wendy Evans Jennifer Forwood Billie and John Gillespie Ellin and Robert Grossman Richard Davidson Mary Ann Drimer F&M Cares Peggy and Donald Foster Ana Giovinazzo Monique Groulx, PhD Danny Davis Charlotte and James Jeanne and John Fadale Mary Jo Fowler Cindy and Neal Gittleman Mary Grout Lezli Davis Drinkwater Rebecca Fahrer Sunshine Fox Stacey and Evan Glanz Sheri Grube Maria and John Davis Donna Driscoll Ann and Joseph Falci Jeanette Franco and M. Pauline and Paul Glatleider Abby and Neil Gurevitz Peggy Davis Judith and Sydney Dromgoole Rich and Jackie Fallon Alex Milhomme Joan Glennon Eyal Gutentag Suzanne Davis Audrey and Lucio Drozdowski Beth Farber and Steve Laser Deni Frand and Mark Green Randi Glickberg Charitable Elaine and Michael Guthrie Cristina De La Ossa and Phyllis Dubetsky Virginia Farley Bette and Louis Franke Fund at Schwab Charitable Jean Haid Hector Salazar Joan and Dennis DuBose Bill Farr Sharron Freeman Darlene Glowczewski Pamela Hail J. Antonelle de Marcaida, MD Alan Dubrow Rosanne Fay Irwin Friedman Brenda and Howard Goffen Stephanie Hailey Pam DeLong Jeannine Dufault Jessica Feeley/Dogs for Jodie and Sanford Friedman Mindy and Michael Goldberg Jana Ham Suzanne DeLorenzo Margaret and Paul Dufault Dystonia Virtual Dog Walk Fujirebio Diagnostics, Inc. Judith and Alfred Goldman Dawn Hamilton Jeanne DelSignore Annette Duffy Odell Carrie Fehlberg Lynn and G. Jeffrey Fullerton Lauren and Matthew Goldman Phil Hamilton Nancy DeMara Jacqueline and Matthew Dunn Leslie Feinberg Karen Gaar Goldman Sachs & Co. Melissa Hamm Cathy Denis Bonnie and Francis Durand Michael Feinstein Judy and Mel Gabriel Craig Goldsmith Lisa Hampton Kathleen Dennick Dr. and Mrs. Stephen Dvorin Elizabeth and Pavel Feldshtein Sharon Gallagher and Doris Goldstein Jeanne Handman Roberta and Patrick Derosa Loretta Dye and Dennis Dye Toni and Joel Fenchel Michael Sussman Colleen Goldstein Arthurene James Haney Stacie and Richard DeSalvo Ellen and Hal Eager Barbara Fernandez Jeanne Gang Tahl and Eric Goldstein John Harder Joyce Deutsch Charlotte Edelman Kristen Fessele Melissa Ganley Jill Renee Good Christine and William Hardman Peter Devino Brooke and Kenny Ehrman Kristen Fessele/Dogs for Cindy-Lu Gans Elizabeth Goodgion Harem Boutique Inc - DBA Jennifer DeVore/ Janis Eiler Dystonia Virtual Dog Walk Susan Ganz Robert Goodman Harem & Company Dystance4Dystonia Nancy and Mike Eisenstadt Debra and Dan Fields Vendora and Arthur Gappert Ellen and Jay Gordon Todd Hart Nancy and John Dick Regina and Gregory Eitzen Darren Fields Allison Garcy Deborah and Michael Gordon Barbara Harte Patricia and Jerry Dickinson Joyce and Donald Eling Owen Fields Barbara and Edward Gartside Barbara and John Gottlieb Jill Hassebrock Laura Didusch Sharon Ellerin Connie Figgie Denise and Greg Gaskell Diana Gould Rebecca and Fred Haston Douglas Dimitri Paula and Lewis Elliott Kara and Richard Fingard Nina and Andrew Gaspar Krista Grabowski Walter Hawrylak Jeffrey Ellison Diane and John Fiore Anna Grames Hayes Family Farms, Inc.

31 Janet Heaton Cheryl House Mavis and Carl Jonsson Lincoln Kilian Ralph Kuhn Lynda and Bruce Limpert Stephen Hegner Constance and Edward Howe The Jorrells Helen Killius Leslie and Leonard Kulbacki Linch Family Charitable Sherry Klein Heitler and Patricia and John Howlett Margie and Ronald Jory Jennifer Kimmel Sandra and Kenneth Kuska Foundation Dan Heitler Phyllis Hubbard Arline and Rich Josephberg Tammy and Les Kinder Emily and Jeff Kuvin Dee Linde/Dogs for Dystonia Ann and Bruce Heller Christine and Kenneth Hudson Debra Josof Joel King Thomas Labagh Virtual Dog Walk Laura Henderson Linda and John Huggins Debra Josof/Dogs for Dystonia Megan King Lachman Family Foundation Inc. Sandra Lindh Michele Hendrick Douglas Hughes Virtual Dog Walk Michael King/Dogs for Dystonia Martha and David Lambert Elizabeth Linfoot Kathryn and Ted Henry Sandra Hunt Giselle Josof/Dogs for Dystonia Virtual Dog Walk Marti Lambert/Utensils to Go Linn Animal Hospital Peggy and William Herman Michele Hurley Virtual Dog Walk Katherine and David Kinney Judith and Deno Langis Richard Lipton Neal Hermanowicz, MD Anthony Igl Ramond Josof/Dogs for Todd Kirwan Mary Jo LaPorte Marci and Richie Litt Charlotte and H. Raul Infused Solace Massage Dystonia Virtual Dog Walk Stephanie and Gregory Kitchin Donald Larsen Lorena Litton Herrera, MD Therapy JP Morgan Chase Foundation Karen Klauseger Dr. and Mrs. Fred Lasky Ming-Jai Liu Nancy and Robert Hershfield Judith Ingelido Kay Judson Marilyn Klein Rebecca and Dennis Laughlin Debra Livingston Rosemary Hertz Kathleen Ingham-Baden and JustGive Elaine Kligerman Julie LaVigne Millie Loeb Shirley Hewitt Thomas Baden, Jr. Steven Kalina Vicki Klinger Serena and Dick LaVine Bruce Loeser Norma and Michael Higbee Jerome Isaacs Sarah Kalish and Sam Weil Kevin Knaack Jessica Lawler Ana Lopez Steve Hills Nancy and Michael Isaacson Ben Kamen Jean and Michael Knab Judith and Ronald Lawler Patricia Loquet and Marianne Hirsch and Beth Israel Ellen Kanter Linda and Richard Knab Clara Lawson Larry Trachtenberg Robert Hickson Joseph Izworski Miriam Kapfer Courtney Knox Virginia Lawther Elaine Losquadro Nancy and Allen Hirschfield Heather Holland and Daryl Kaplan Judith and Jerome Koch Stephanie Leach Susan and Thomas Lotz J. Carroll Hitch John Jackson Anita and Michael Kaplan Carol Koepke Judith Leavitt Bronlyn Louck Loretta Hodson Mr. and Mrs. Terry Jackson Barbara Kapnick Karen Komoroski Audrey Lebedzinski Cyndy and Pete Lounsbury Joyce and Timothy Hoerst Nancy and Allen Jacobson Kelly Karas Rhoda Kopy Lisa Lefkovitz Elena and Dylan Lovell Karen Hoffman Barbara and Eric Jaffe, MD David Katz, MD Maya and Ittai Korin Ira Leibowitz Nora and Richard Luca William Hogg Maria and Robert Jefferies Diane Katz Phyllis and Martin Korn Judith Leinbach Deborah Lund Carrie Holderbaum Lari Jimmerson Dyan Kaufman, PhD Michelle Kosal Leominster Monument Co. Bernita Lundquist Kristina Holland Jack Jimison Paul Kavanaugh Craig Koshkarian Lynda Lepore Delana and Michael Lynch Beverly and Jeffrey Hollander Teresa and James Joerger Jamie and James Kayler Gary Krahn Barbara and John Leschisin Michelle Annette Lynn and Michael Holoka Alexandra and Patricia John Cynthia Keefe Rosemary Krause Andrew Lester Janet Mae McKay Joan and Steve Holzman Gretchen Johns Kathleen Keegan Harriet Kraver Cheryl Levenson Anita Lyon Judith Homer Barbara Johnson Laurie and Charlie Keenan Jessica and Barry Kraver Karen and William Levine Rebecca and David Lyons Rona and Seymour Homer Elizabeth Johnson Laura Kelemen Joan and Thomas Kreckman Sue Levy Brian Lysell Nancy and Albert Homiak Jack Johnson Susan and Richard Kelin Lynn Krejci Meg and Daniel Lewis Hollie Machen Susan Hopkins Maurine and LeRoy Johnson Karen Kelly Kimberly Krieger Tsao-Wei Liang, MD Ellen and Cletus Magsamen Hopkins’ Handyman Services Robin Johnson Martin Kern Kroger Toni Lichman Patricia Maguire Michael Horan Sarah Johnson Carrol Kerrigan Carol and David Kroot Shaynee and Michael Dr. and Mrs. Arthur Mahler Dianne Horn Elaine Jones Joyce and Donald Kessler Paul Krucke Lichtenstein Stephanie Majca Kenneth Hortop Rick Jones Marilyn and Mark Kessler Barbara Krzyzek Nicole Liming Major Health Partners Richard Horwitz Sharyn and Ronald Kessler Elizabeth Kugel-Whetstone Marilyn Malkin

32 Musetta Malone Rebecca McReynolds Jeanne Moltke-Hansen and Heather Nemec Kristine Padesky LuAnne Pinedo Madden and Charles Maloney Stacy Meade Harry Schenk Julie Neubacher Julie Pallach David Madden Janet Malsan Mark Meany Rosie and Michael Moncrief Anita and Charles Newberg Beth and Tony Paolero Hallee and Dave Pitter Lucille and James Manak Naomi and Lewis Medoff Ellen and Bruce Mondschain Florence Newsom Karen Papke Stephanie Plantone-Hubbard The Mandel Foundation Collis Meehan Paulette Mondschein and Lonnie and Jerry Nichols Carrie Pappal and Anthony Hubbard Anita Manes Ivan Meehan Kenneth Garrett Alexander Nicoloff Elizabeth Parese and William Plate, Jr Julie Manning Lisa Meindel Janell and Gary Monetti Brenda and James Nix Joan Chambers Mary Pleasants Jon Manzanares Grace and Jonathan Melton Nathan Monroe Alison Nixon BarBe and Dave Paris Lorraine and Stan Plett Linda and Gordon Mappes Mary and Ronald Melton Brandon Montgomery Patricia Nobs Anthony Passarello Teresa Podimatis John Marcucci Nicole Memmott Michelle and Forrest Moore North Mianus School Debra and Joel Pasternack Karelyn Pohl Markle Gift Fund Maria Mendoza Rebekah Moore Carol Norton Dennis Patrone Sharon and Francis Polaha Stephanie and Stevie Marks Janis and Alan Menken Tonya Moore Elaine and Jerald Norton Jamie Patton Charles Polcaster Joyce and Michael Maron Charity Fund Mary Morisette Jennifer Notar Mary and Jerry Patton Carol Pollack Peggy Marquoit and Margaret Sherri Merrifield Mary Morisette/Dogs for Samantha and Michael Jennifer Paulsen Lynn Pollack Marquoit and David Marquoit Kathleen Messina and Dystonia Virtual Dog Walk Nussbaum Carter Paulson Lee Pollan Corey Martinez Bernard Beck Greg Moritz Patty and Michael Oaks PayPal Giving Funds Barbara Pollard and Mitch Stein Kathryn Matheson and Donna and Dan Metherell Jeffrey Morris Emma O’Brien-Gayes Dale Pearce Ashley Polley James MacMillan Michelle and Wendell Mettey Jessica Morris Shirley O’Connell Rosse Mary Peavey David Portman Carol and David Matson Erica Meyer Jean and John Morris Kathleen O’Connor Vicki and Schuyler Peck William Powell, Jr. Mary Beth Matteo Marlene Meyer Kim Morris Patricia O’Connor Janet Perez Janis Powers Alisa and Edward Matushek Helen and Edwin Meyers Jay Morstein Susan Odegard Wood Elizabeth Perkins MacKenzie Prater and Edwin Mazoue Sheila Michael Karen Moss Kathleen O’Hare Patricia and James Perkins Jaykob Walker Annette and Charles McAteer Sharon and Louis Miles Lori Moss and Gary Antonia Ohle Robin Perna-Edwards and Praxair Matching Gifts Program Dan McCaffery Janet and Douglas Miller Oltmans, PhD Paula and Richard Okolowicz Scott Edwards Naomi Prell David McCarthy Jency Miller Movement Fitness Rebecca Olson and Sarah Perry Marianne Prentice Judith McConnell Patricia and Michael Miller Gail and Thomas Murawski James Haines Gail Pestine Preppy Pet Judith and William McCourtney Stacie Miller Marilyn Murlowski Sandra and Donald O’Malley Susan Pestine Sally and Frank Presti Mary Kay McCoy Timothy Miller Jane and Mack Murphy Cherie and Michael O’Malley Jamie and Matt Pestine Dana and Marc Price Rick McCracken Diane Millikan Martha Murphy Max and Ruth Oltarsh Sheldon Pestine Sharon Price John McCulla Mark Milstein Robbie and Ron Nabors Foundation Inc Zach Pestine Janice and Kenneth Printen Nancy and Eddie McCurdy Cheryl and Michael Minikes Deborah and Isaac Nachbar Priscilla Onizuk Jane Petering Carolyn Pritchard The McGraw-Hill Companies Minute Man Arc Jessica Nadel and Joshua Feffer Judith Opper Gary Petrie Diane and Robert Pritchard Margaret and Joseph McHugh Marla and Robert Mishler Elizabeth and Rami Nahmias Lisa and Josh Ostrovsky Barbara and Thomas Pfendler Joanne Proschinger and Ellen McHugh Eric Mishlove Sandra and Robert Nathans Mary O’Sullivan Pamela and Roger Phelps Jane Prosnit Billy McLaughlin Mary Jo Miske Jennifer Nee Lily and Jon Otis Melissa and Roger Phelps Barbara Pryor Elaine McLean Deborah Mitchell MaryRae Nee/Dogs for Lee Overton Doug Philips Patricia Pulliam Stacy McMinn MoFab Inc. Dystonia Virtual Dog Walk Johnnie Owens Barbara and Jeff Piermont Jasmin and Dhatri Purohit Nikki and Herbert McMurtry Corinne Moller MaryRae Nee Toni Ownes Mary and Tom Piette Teresa Pydynkowski Kathy McPeters Debbie and Ed Nelson Owl Orthodontics Sandra Quinn

33 Freida and Charles Rabaut Margaret Rodkin Ruth and Eugene Sacks Secure Operations Monitoring Mr. and Mrs. David Smith Rebecca Steves Linda Rabino Violet Roghair/Dogs for Sandy and Sammy Sahn Services Inc Carol Anderson Smith and Marta Stoeckel-Rogers and Nancy and William Rackoff Dystonia Virtual Dog Walk Linda and Steve Sahn Joyce and William Sederburg Frederick Smith Tim Rogers Susanna Ragatz Violet and Richard Roghair Eric Salas Sally Seekins Georgia Smith Charlene Stoltenhoff Rita and Stan Raider Audrey Rohlinger Rodolfo Salas Virginia Seidel Judith Smith Sandra Stoneham Kimberly Rakos Denise Roistacher Rodolfo Salas Select-Harvest U.S.A. LLC Mimi Smith John Stoner Heidi Ramos Jamie and Jon Romick Howard Saltzman Christine Semeniuk Patricia and Willard Smith Jane Strange Regina Rath Jody Roosevelt/Dogs for Merry Salyers Sam Sewell Susan Smith-Manning Roberta Strasburg Deborah and Michael Dystonia Virtual Dog Walk Bruce Sams, MD Cheryl Sgrignari Gail and Jeffrey Smoulder Karen Strickland Rauscher Rebeka Rosebrugh Kathleen Samuel Surekha and Nrupendrarai Shah Courtney Sneath Shannon Struthers Yvonne Rebak Ayelet and Aaron Rosen John SanFilippo Shari Shape Anne and Don Snider Ann Stuetzer Linda and James Reed Barbra and Reid Rosen Rosaria Santee Horace Shaw Kim Snyder Arlene Sturm Lillian Reeder Rhonda Rosen Amy Saphier Maureen Sheehan Thomas Sofianides Dennis Sundheim Jeanne Reese Roslyn Rosen Faye Sarkowsky JoAnn and W. Sheehan Paula Sogard Judith and Douglas Swager S. and W. Reese Sally Rosen Jennifer and Gregory Sattler Sharon Sheesley Nancy and Steve Sohn Peggy and Jim Swartchild Lynda Reeves Esther Rosenberg Marilyn Saul Ruth Sheidlower Maria and Mauricio Solis Ann and Michael Swartz Paul Reiber Lisa Rosenfeld Sherrie Savett J. Mark Sherock Traci Sons Lee Sweetland Joni Reimann Veronica and Ron Rosenquist Susan and Joe Schackman Eugene Shifrin Tara and Chris Sorley Edward Swell Karen Reiter Lee Rosenstein-Gregory Susanna and Noah Schankler Pamela Shoff South Puget Sound Gay Swenson Patrick Reppen Roseville Lions Club Monica and Rick Schatz Sarah Short Neurology, PLLC Renee Switzer Paula and Thomas Revekant Michael Rotay Anna and Jeffrey Schiefelbein Carol and Norman Shubert Joey Specker Anne and Ronald Switzer Donna Reyes Gayle Roth Joanne Schiffman and E. Chandler Shumate Virginia and Robert Spencer Frank Szczerba Janet Reynolds Nancy Roth Nicholas Gumas Christos Sidiropoulos, MD Moshe Spetner Melissa Szczerba Jennifer Reynolds Muriel Rothman Miriam and Theodore Schiffman Sheila and Arthur Sieder Mary Stachura Janice and William Szymanski Greg Rhoads Ellen Rothschild-Taube and Joshua Schiller Jean Siegel Lindsay Stafford Marilyn and Jeffrey Tabak John Rhyne III Mitchell Taube Rachel Schlabsz Radienne and Frank Sikorski Mary Stamatis Brianna Tabil Joseph and Anna Richard Joyce and Walter Rouba Mary Ann Schmit Gerald Silberman Karen and Eric Stark Shaunna Tafelski Nancy and Sandy Richman Carol Rowberg Shanna and Brad Schmitt Susan Silver Taisiya and Dimitry Starominsky Ms. Mary Tapper Ashley Riedy Cheryl Rowe Jane and Henry Schneider Deborah Silverberg Charles Stegen Susan Tate Anne Rieschick Lauren and Josh Rozbruch Paula Schneider Ronald Silverton Anita Stein Adam Tattelbaum Jane and Eugene Ring Merton Rubens Pamela and W. Winslow Don Simon Judy and Edgar Stein Beatrice and Nathan Thomas Rini Daniel Rubin Schrank Arlene and Charles Simpson Eleanor and Joel Steinberg Taubenfeld Laureen Robben Gail Rudo Nicholas Schrider Sue and Steven Simring Jill and Jon Steinberg Taurus Financial Services, Inc. Barbara and Howard Roberts Linda and Billy Rue Marilyn and Monroe Schulder Jamie and Dave Sirkin Laura Harrington and Joanne Tax Michael O. Roberts Deborah Runck Marilyn and Russell Schulz, Lynne and Terry Sklar Irving Steinfink Freda and Danny Taylor Laura Robinson Jennifer Rusby USN, RET Amanda Sleeper Remy Steinfink Jacqueline Taylor Shirley and Mark Robinson Elizabeth Rush Erin Schwartz Laurie and Rick Sleeper Lezah and Ronald Stenger Team Anna’s Bananas/ Melinda Rocha Klaus Ruter Stephanie and Alan Scrime Barbara Smith Bettie and Charles Stephens Cincinnati Dystonia Zoo Walk Ellen and Gerald Rodis Loredana and Stephen Scrobe Brian Smith

34 Team Arya’s Red Hot Chili Team MJ/Phoenix Dystonia William Tinklepaugh Joanne Volponi Judith and Alan Wertheimer Khalil Zewahreh Steppers/Cincinnati Dystonia Zoo Day John Toffefson William Von Hegel Kimberly West Elizabeth Zimmermann Zoo Walk Team Mountain Climbers/ Eamon Toney Ellen Wagner and Jim Pamela and Gary Wheatley Kurt Zimmermann Team Baby Sharks/San Diego Phoenix Dystonia Zoo Day Marie Torres Perez Cavagnaro Katherine Bryan White and Alana Zinn and Jeremy Beyda Dystonia Zoo Day Team Movers & Shakers/ Barbara and Thomas Trager James Wagner Justin White Sara Beth Zivitz Team Champion/Fresno Phoenix Dystonia Zoo Day Mollie and Ken Traub Annette Waite Courtney and Kay Whitlock Katie Zlotnick Dystonia Zoo Walk Team Moving Disorderly/Twin Carol and Clifford Trenton Joanne and Samuel Walker Catherine Wieland Marie Zuidema Team Cincinnati Children’s Cities Dystonia Zoo Walk Shirley Trettenbach Emily Walker-Robbins Shirley Wilkinson Bonita and Michael Zurek Hospital Medical Center/ Team Muck Family/Pittsburgh June Tritley Emily Walker-Robbins/C.O. Monika Willging Cincinnati Dystonia Zoo Walk Dystonia Zoo Walk Anita Ann Trudell Pigs in Space BBQ Brian and James Williston Team Cornell/Bronx Dystonia Team Penn/Philadelphia Natalie Trunzo Team Ladies Lesley and Raleigh Willson Zoo Walk Dystonia Zoo Walk Jane Tucker Lisa Walter Mary Ann Wilson Team Cris/Fresno Dystonia Team Reno/Providence Tuesday at Ten Bible Study Eileen and James Warburton Zulma and Jake Wilson Zoo Walk Dystonia Zoo Walk Karen and John Tuozzolo Linda Warren Charles Wilster Team Dave’s Co-Pilots/ Team Rick and Friends/ Wendy and Jeffrey Turk Irvina and Sherwyn Warren Alice Wiltshire St. Louis Dystonia Zoo Walk Pittsburgh Dystonia Zoo Walk Anthony Turner Barbara Warrick Leslye Winslow Team Dinos for Dystonia: Team Seismic Activity/Twin Linda Tuttle Elizabeth Watson Rick Winslow Making Dystonia Extinct Cities Dystonia Zoo Walk Carol and Douglas Twedt Louanne Watson Wintrust Bank Phoenix Dystonia Zoo Day Team Southwest Synapse Pauline and Irvin Tyson Shannon Watson Jill Fink and Jerry Wise Team Dys-won’t-ia/San Diego American Association of Carol Ulrich Elizabeth Webb Sheila and Steven Wolf Dystonia Zoo Day Neuroscience Nurses/ United Methodist Women Gail Webb Ann Wolff Team Extreme Attitude/ Phoenix Dystonia Zoo Day Christ United Methodist Church Anne and Randy Webber Julie and Bruce Woolf Pittsburgh Dystonia Zoo Walk Team Tall Drinks of Water/ United Way of Greater Portland Marilyn and Frederick Wegner Nancy and Jeff Worthington Team Hope for a Cure/Twin Phoenix Dystonia Zoo Day United Way of Rhode Island Sarah and Paul Wegner Marcus Wosk Cities Dystonia Zoo Walk Team TD4Life/Bronx Dystonia United Way of Rockland Diana Wehner Grace and Steve Wu Team Jefferson/Philadelphia Zoo Walk County, Inc. Ezra-Habonim The Niles Carol Wyatt Dystonia Zoo Walk Team Twitchy/Twin Cities Valley of The Sun United Way Township Jewish Jo Wyeth Team Jens walkers 4 hope/ Dystonia Zoo Walk Ruth Vanderburgh Congregation Edward Wynne Cincinnati Dystonia Zoo Walk Team UMN Nerds/Twin Cities Stacy and Erik Van Gunten Dana and Jon Weinbach Kim Wynne Team Kayla/Cincinnati Dystonia Dystonia Zoo Walk Maura VanNess Karen and Edward Weinberg Terri and Steve Wynne Zoo Walk Joan Tenhundfeld Virginia Van Wagenen Robin Weintraub Amit and Henry Yaffe Pictured on the cover: Team Laurie’s Luck/Bronx Beth Thayer and Katie Thayer Marla and Jeff Vaughn Andrea Weisbrot Gail and Morris Yamner US Congresswoman Dystonia Zoo Walk Debra and Jeff Thomas Miodrag Velickovic, MD Jenifer Weisman Laurie and Gary Yarnell Jan Schakowsky and Mike Team Mandi/Providence Joan and Paul Thomas Shanthi and Prabaker Jill and Arnold Weiss Oma Yeary Cahall, the Sorley Family, Dystonia Zoo Walk Roy and Rebecca Thomas Venkatachalam Gail and Gerald Wells Debra Young Team Missy’s Keep Your Eye Betty Thomson Melissa and Art Vercillo Nicole and Perry Wells Rosemary and Edward Young Ginny Bryan, Marilynne On The Prize/Detroit Dystonia Donna and Harold Thorp Connie Vick Wells Fargo Clearing Julie Young Herbert and Mayor Esther Zoo Walk Janice and Richard Tillis Carol Vigil Services, LLC Laurie and William Young Manheimer, and Aasef Elizabeth Tillson Susan Wensel \Joni and Michael Zavis Shaikh MD, PhD.

35 DYSTONIA MEDICAL RESEARCH FOUNDATION One East Wacker Drive, Suite 1730 Phone 312.755.0198 • Toll-Free 800.377.DYST (3978) www.dystonia-foundation.org