C O N S T A Y I N G A N E F D C E T E D

2020 ANNUAL1 REPORT M I S S I O N

The mission of the Dystonia Medical Research Foundation (DMRF) is to advance research for more effective treatments and ultimately a cure, to promote awareness and education, and to support the well-being of affected individuals A and families. B D Y S T O N I A

U Dystonia is a neurological disorder that causes excessive, T involuntary muscle contractions. These involuntary contractions force the body and limbs into abnormal movements and postures. Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children 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, dystonia remains a chronic disorder for which there is not yet a cure.

“DMRF is outstanding. I know you are always there. I call if I have an issue or a question, and knowing you are working on dystonia has provided a level of support for me. It helps to know you’re not alone.” Susan Aguilera, DMRF Legacy Society

2 Message from Leadership The health and wellness of the dystonia community have always been at the heart of the DMRF mission. 2020 only reinforced this priority as we carefully considered how to manage programs during the Covid-19 pandemic while avoiding unnecessary risk. We kept focus on our absolute commitment to all who depend on and support our work. We rose to the challenge, supporting the community in ART KESSLER JANET L. HIESHETTER PRESIDENT EXECUTIVE DIRECTOR staying safe and staying connected.

Covid-19 intensified circumstances that individuals and families affected by dystonia already experience on a regular basis: the uncertainty of grappling with a serious illness, the care with which we select sources of information to help make health decisions, the disappointment of missing social gatherings, financial fears, and the strain of adapting to a new normal. The pandemic has taken a hard toll on the dystonia community. We are grateful so many connected with DMRF for assistance, trusting the DMRF as the go-to organization concerned for their behalf. We mourn those in the dystonia community lost to the pandemic and extend our deepest condolences to every grieving family.

Throughout 2020, the work of the DMRF did not stop. We adapted. We made the inevitable decisions to cancel in-person events and local support group meetings, but vowed that our outreach would not diminish. We were reminded it is more important than ever to nurture relationships and connect socially, even from a physical or geographic distance. No one should have to face dystonia alone, and DMRF is committed to making sure no one does.

The push for a cure did not stop. Oddly enough, the challenges presented by Covid-19 only strengthened DMRF’s relationships with research leaders and investigators throughout the dystonia field by replacing the in-person meetings that traditionally bond research and clinical communities with more frequent communication by phone and virtual technologies. There has been no shortage of discussing, brainstorming, and planning important new projects.

DMRF could not have weathered this year without our loyal and generous community. Despite the overwhelming challenges of 2020, supporters like you stepped up to make sure the mission continues. Thank you for staying connected and supporting our work.

Art Kessler Janet L. Hieshetter President Executive Director 3 4 research fellowships supported young dystonia investigators. A healthy research field requires a constant influx of bright new people and ideas. DMRF provides funding opportunities at strategic stages in a young researcher’s career, designed to foster the next generation of dystonia leaders.

Developmental Regulation of A Genetic Approach towards F eIF2alpha Pathway Activity and Identifying Torsin Function in E its Significance for DYT1 Dystonia Relation to DYT1 Dystonia Ashley Helseth, MD, PhD, Anthony Rampello, PhD L Duke University Yale University Mentor: Nicole Calakos, MD, PhD Mentor: Christian Schlieker, PhD L Barbara Oliver Memorial Supported by the family of O Dystonia Research Award Barbara and Ron Oliver W Using the Nematode Caenorhabditis Impact of Microglia on Abnormal elegans to Identify Candidate Synaptic Plasticity and Development S Substrates for OOC-5/TorsinA of Dystonia in Transgenic DYT1 Gabriela Huelgas-Morales, PhD Mouse Models H University of Minnesota Lisa Rauschenberger, MD, PhD I Mentor: David Greenstein, PhD University Hospital of Würzburg Barbara Oliver Memorial Mentor: Chi Wang Ip, MD, PhD P Dystonia Research Award David M. Rudolph Dystonia S Research Fund Award

“The DMRF has had an incredible influence on dystonia research over the years. DMRF has been a major game changer in grants funded by the National Institutes of Health and work leading to major findings in phenomenology, genetics, pathophysiology, and treatment.” Joel S. Perlmutter, MD, Elliot Stein Family Professor of Neurology, Professor of Radiology, Neuroscience, Occupational Therapy and Physical Therapy, and Head of Movement Disorders at Washington University in St. Louis & DMRF Scientific Director

4 2 clinical fellows received training in dystonia diagnosis and treatment. DMRF sponsors one-year clinical fellowships to train second-year fellow physicians in the diagnosis and treatment of movement DMRF responded to disorders with special competence in dystonia. the impact of Covid-19. The outstanding clinicians who complete training have joined movement disorder As long as individuals are diagnosed with programs at prestigious institutions and dystonia, the DMRF will continue pushing begun practicing in communities previously the research forward and attending to the without a dystonia expert. needs of those H O P E affected. The Abhimanyu Mahajan, MD, MHS (2019–2020) dystonia com- University of Cincinnati munity struggles with access to effective Mentor: Alberto J. Espay, MD, MSc treatment, social isolation, and the societal Research: Cerebellar Degeneration in challenges so many with disabilities and Tremor-Dominant Cervical Dystonia: chronic health conditions face on a daily Clinical and Neuroimaging Cohort Study basis. Covid-19 exacerbated these challenges for many. Margi Patel, MD (2020–2021) Emory University Mentors: Stuart Factor, DO & Svjetlana DMRF launched an online survey to seek Miocinovic, MD, PhD feedback about the impact of the pandemic. Research: Evaluating Quantitative Response The survey asked about treatment delays, and Temporal Profile of Improvement of how people were feeling physically and Dystonia across Multiple Body Regions to mentally, and what DMRF programs and Bilateral Deep Brain Stimulation in Isolated activities were of highest interest. The Non-Acquired Dystonia Patients results reported widespread disruption of dystonia-related medical appointments, DMRF is proud to note that mentor self-reports of worsening dystonia symptoms, Svjetlana Miocinovic, MD, PhD is a self-reports of worsening mental health, past DMRF Clinical Fellow. and high interest in virtual DMRF programs. DMRF redoubled efforts to address these The Clinical Fellowship Training Program issues in our programs and activities. was supported by grants from Merz Pharmaceuticals, The Allergan Foundation and Ipsen.

5 11 research investigations pursued critical scientific advancements. DMRF-funded investigators pursued new treatment strategies, explored dystonia brain networks, targeted dystonia-causing genes, and studied the proteins encoded by these genes. Covid-19 safety precautions affected research at G R A NST academic institutions around the world, in many cases temporarily suspending lab work. This includes DMRF-funded research. DMRF worked with investigators to revise research schedules and stay informed of re-openings. Fortunately, time away from the lab provided added time to analyze data collected prior to the shutdown and prepare important papers for publication.

Genetic Modifiers of enetranceP Using Functional Connectivity to Optimize in DYT1 Dystonia Deep Brain Stimulation in Dystonia David Arkadir, MD, PhD Andrea Kühn, MD, Charité University Berlin Hebrew University of Jerusalem Supported by Cure Dystonia Now Supported by Cure Dystonia Now The Role of Cholinergic Neurons in Octanol Effect on ymptomsS and Network Isolated Focal Cervical Dystonia Dysfunction in Myoclonus-Dystonia: Scott Norris, MD An Intoxication-Free Therapy? Washington University in St. Louis Cecile Gallea, PhD, Pitié-Salpêtrière Hospital Supported by the Brown Family Foundation Banking of Myoclonus-Dystonia Biological Materials Machine Learning Guided Deep Brain Mark LeDoux, MD, PhD, University of Memphis Stimulation to Cure Neurological Disease Supported by the Brown Family Foundation Jesse Goldberg, MD, PhD, Cornell University Supported by the Dorothy Feiss Scientific Investigating Multimodal Neuroimaging for and Medical Research Fund Probing Brain Networks in Cervical Dystonia Richard Reilly, PhD, Trinity College Dublin Unraveling Hierarchical Network Loops Supported by Cure Dystonia Now in Isolated Dystonia Xin Jin, PhD The Salk Institute for Biological Studies Supported by Cure Dystonia Now 6 “I started my laboratory in 2009, and began right out of the gate working on dystonia. To this day dystonia remains our focus. The pandemic certainly presented challenges and we had to close the lab for some time. When we re-opened we had to take into consideration public health guidelines. But we found a very good way to deal with the situation, operating in shifts and keeping social distancing, switching from in-person lab meetings to working remotely. And we learned a few things by working remotely that, even when we can return to working without restrictions, we may continue for efficiency. So that has been positive.” Christian Schlieker, PhD, Associate Professor of Molecular Biophysics and Biochemistry and Associate Professor of Cell Biology at Yale University School of Medicine & DMRF Medical & Scientific Advisory Council Member

Cholinergic Interneuron Dysfunction in a Phenotypic Mouse Model of Dystonia Mariangela Scarduzio, PhD University of Alabama at Birmingham

Interregional Brain Connectivity in a Mouse Model of Cerebellar- Induced Dystonia Roy Sillitoe, PhD Baylor College of Medicine Supported by Cure Dystonia Now

Identification of Neuronal Mechanisms of Agency in Myoclonus-Dystonia Yulia Worbe, MD, PhD Pitié-Salpêtrière Hospital Supported by the Brown Family Foundation

7 D I Almost overnight, physicians S “who treat dystonia had to M O V E M E N T acclimate to telemedicine to continue to deliver good, R consistent clinical care. Our D patients shared our growing pains. Observation, the art E movement disorder neurolo- R gists pride ourselves on, had to adapt to the limitations of a computer screen. Even telemedicine, surprisingly effective as it has been, could not help with certain aspects of care. Procedures like botulinum toxin injections and deep brain stimulation programming required us to see each other in-person. The warmth of a familiar face was replaced by personal protective equipment. Some of us were deployed to inpatient Covid-19 units or infected ourselves, and were not able to take care of our patients in clinic, which we so enjoy doing.

“The Covid-19 pandemic has changed the way we live for over a year. Most of us have suffered directly and/or along with friends or family. But we have endured. Necessity has been the mother of invention. Whether with careful in-person visits or through telemedicine, doctors and patients have strengthened their bond and established new ones. With vaccination and continued vigilance, there is a light at the end of the tunnel.

Abhimanyu Mahajan,” MD, MHS, Assistant Professor of Neurological Sciences, Section of Movement Disorders, at Rush University Medical Center & DMRF Clinical Fellow (2019-2020)

8 The Dystonia Coalition advanced global research progress. The Dystonia Coalition is a collaboration of medical researchers and patient advocacy groups supported by the Office ofare R 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. D I The DMRF plays an integral role by providing pro bono staff support for the Coalition as an administrative center, maximizing funds invested in research. S This has saved the Dystonia Coalition $1.7 million in indirect costs. In 2020 the DMRF hosted the June annual meeting, co-funded a career development C grant, and partnered on development of a patient-reported outcomes O smartphone app to track response to treatment. V Investigators had access to shared E data for studies. R The Global Dystonia Registry is a collaborative research initiative that I depends on the DMRF for operational and administrative management. E The Global Dystonia Registry supports future dystonia studies through the confidential collection of patient data and distribution to dystonia S investigators. More than 6,000 individuals have joined.

The Dystonia Brain Collective is another DMRF-led collaborative effort among participating dystonia organizations. The purpose is to promote brain donation registration in support of research and provide investigators with access to tissue samples. DMRF extends our deepest gratitude to donors’ families for facilitating these invaluable contributions to research.

9 DMRF offered virtual programs to address community concerns. Local educational meetings were unfortunately cancelled due to Covid-19. In order to ensure continued educational outreach to patients and families, DMRF offered an expanded schedule of online webinars. The following programs were broadcast live to a total audience of 5,800 and remain available on the DMRF website and YouTube channel:

n Dystonia & Sleep – January 14 V Guest: Danette C. Taylor, DO, Mercy Health Hauenstein Neurosciences I n Dystonia Genetics & Genetic Counseling – February 27 R Guest: Deborah Raymond, MS, CGC, Mount Sinai Beth Israel

T n Dystonia & Covid-19: Your Questions Answered – April 1 U Guests: Mark Hallett, MD, National Institutes of Neurological Disorders & Stroke and Robert Chen, MA, MSc, MB BCh, MB BChir, University of Toronto A Joint program with DMRF-Canada

L n Telemedicine & Dystonia – May 5 Guest: Harini Sarva, MD, Weill Cornell Medicine n Untangling the Complexity of Dystonia: 40 Years of Research Achievements – May 28 Guest: Joel S. Perlmutter, MD, Washington University in St. Louis, DMRF Scientific Director n Merz Co-Pay Program – June 2 n Ipsen Co-Pay Program – June 23 n Allergan, an AbbVie Company Co-Pay Program – July 14 n Dystonia Educational Meeting – October 20, 2020 Guests: Pravin Khemani, MD and Carter Gerard, MD, Swedish Neuroscience Institute Joint program with Swedish Neuroscience Institute

10 Dystonia was included in the DOD Congressionally Directed Peer Reviewed Medical Research Program. 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 Directed Peer Reviewed Medical Research Program (CDMRP). Unlike the National Institutes of Health and 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 drafted by Congress every year. “I am passionate about advocacy because I come from a multi- The hard work of dystonia advocates on generational family with dystonia. this issue has resulted in $17+ million from My father had dystonia. I have the DOD awarded to outstanding dystonia investigators. dystonia. My daughter has dystonia. It is my hope and prayer that The DOD integrates patients and family we can wipe it out for future members into the CDMRP review process generations. With everyone’s by assigning consumer reviewers to help, I believe we can.” participate alongside research experts. Carole Rawson, DMRF Chair of The DMRF is invited each year to nominate Public Policy & Chair of members of the dystonia community for Dystonia Advocacy Network these important positions.

Hundreds took action to educate Congress. The Dystonia Advocacy Network’s (DAN) Advocacy Day on Capitol Hill planned for March 24–25, 2020 in Washington, DC was cancelled due to Covid-19, but the virus did not prevent the dystonia community P O LCIY from reaching out to Congress and giving voice to the needs of affected individuals and families. Hundreds of people reached out to their US Senators and US Representatives via phone and email to push the DAN legislative agenda—far exceeding the number of advocates typically able to attend in-person Dystonia Advocacy Day. DAN unites around legislative and policy issues of concern to the dystonia patient community. 11 2,500 Virtual Dystonia Zoo Day supporters raised awareness and funds. Virtual Dystonia Zoo Day on September 12, 2020 was a powerful demonstration of unity. This first-ever event connected thousands of individuals from all 50 states and nine countries—an unprecedented scope for a DMRF community program. The event promoted dystonia awareness and raised funds to benefit DMRF. Among the special guests were Lolly Lardpop, a puppet performed by Emmy-nominated entertainer Leslie Carrara-Rudolph, best known for her performance of Abby Cadabby on the iconic children’s television program, Sesame Street. The program included a live zoo keeper chat with Toledo Zoo & Aquarium, research update with Medical & Scientific Advisory Council Member Christian Schlieker, PhD and DMRF Barbara Oliver Research Fellow Anthony Rampello, PhD of Yale University, children’s programming, chair yoga with Richard Sabel, MA, MPH, OTR, GCFP, and Q&A with a panel of movement disorder experts: Joanna Blackburn, MD of Northwestern Medicine, Rachel Saunders- Pullman, MD, MPH, MS of Mount Sinai, and Michele Tagliati, MD of Cedars Sinai. The program closed with a sing-a-long with Awareness Ambassador and Emmy Award-winning musician Billy McLaughlin and band. National Sponsors were Allergan, an AbbVie Company; Merz; and Ipsen Therapeutics.

Many thanks to National Planning Committee members Jacquelyn Coello, Ed Cwalinski, Beth Farber, Karen Flanagan, Shanna Schmitt, Paula Schneider, Pam Sloate, and Brian Smuda.

12 “When someone dear to my heart got diagnosed with dystonia I had no idea what that meant. I witnessed his journey and the more I learned the more I felt compelled to share with others how important it is to shine a light on the research. When Lolly and I participated in zoo day and got to know the community, and other families affected by dystonia, I knew I would forever be dedicated with all my heart to this foundation and make sure people know how important it is for people to know about it.” Leslie Carrara-Rudolph, Special Guest, Virtual Dystonia Zoo Day

13 Non-profit rating organizations acknowledged DMRF excellence. DMRF earned the highest marks from Charity Navigator and Guidestar, highlighting DMRF’s commitment to fiscal responsibility and transparency.

A W A R E Cheri Tannenbaum, daughter of Untangling the Complexity of N Founders Samuel and Frances Dystonia: 40 Years of Research E Belzberg, publicly shared her story Achievements is a 20-page report in numerous news outlets following that highlights dystonia advancements S release of her memoir, Woman of attributed to the DMRF’s 40+ years Few Words: My Creative Journey of investment in research. S With Dystonia.

The Samuel Belzberg 6th International Dystonia Symposium in Dublin, Ireland Musicians With Dystonia was renamed was rescheduled for June 1–3, 2023. The Leon Fleisher Foundation for Musicians with Dystonia to honor the late piano maestro and dystonia spokesperson who died in 2020. 14 50+ support groups and moderated online forums created social connection. Feelings of isolation are common among individuals and families impacted by dystonia, and can be devastating to physical and emotional health. Covid-19 exacerbated these feelings for many, underscoring the need S U P P O R T for social connection and peer support. DMRF support groups pivoted to hosting meetings via video conference, offering the opportunity to gather virtually with others who understand the challenges of living with dystonia. Virtual meetings attracted participants who had previously never attended a local meeting. Online forums continued to provide connection DMRF provided programs and resources to 55,000 to thousands around the country, and people in 2020. around the world. The DMRF volunteer network is also made up of individuals devoted to awareness, fundraising, and/or serving as area contacts.

Clinicians strengthened educational resources. DMRF partnered with past Clinical Fellow Harini Sarva, MD to create the Clinical Educational Resources Committee, an advisory group of physicians to review patient education materials. DMRF educational brochures and resources are always medically reviewed, and this committee further ensures the quality of the content by inviting feedback from physicians.

The committee members are Harini Sarva, MD (Chair) of Weill Cornell Medicine, Abhimanyu Mahajan, MD, MHS of Rush University Medical Center, Christopher Groth, MD of University of Iowa, and Lindsey Neimand, MD of Caremount Medical (NY).

15 DYSTONIA MEDICAL RESEARCH FOUNDATION Statement of Activities STATEMENTfor the year ended OF December ACTIVITIES 31, 2020 DYSTONIA MEDICAL RESEARCH FOUNDATION | YEAR ENDING DECEMBER 31, 2020 Without WITHOUTDonor WithWITH Donor RestrictionsDONOR RestrictionsDONOR Total REVENUES,Revenues, GAINS Gains & and SUPPORT Support RESTRICTIONS RESTRICTIONS TOTAL Donations and grants $ 1,409,297 $ 544,490 $ 1,953,787 PPP SBA grant 142,797 142,797 Bequests 22,052 22,052 Special events, net of direct benefits to donors of $686 337,484 337,484 Investment income 323,629 424 324,053 Other 3,779 3,779 Net assets released from restrictions 352,881 (352,881) - Total Revenues, Gains and Support 2,591,919 192,033 2,783,952

EXPENSESExpenses Program services - Science 1,199,379 1,199,379 Awareness and education 384,641 384,641 Membership and support 143,633 143,633 Advocacy 83,764 83,764 Total program services expense 1,811,417 1,811,417 Supporting services - Administration 189,920 189,920 Fundraising 264,558 264,558 Total Expenses 2,265,895 2,265,895 Change in Net Assets 326,024 192,033 518,057 Net assets, Beginning of Year 2,558,132 1,589,368 4,147,500 Net Assets, End of Year $ 2,884,156 $ 1,781,401 $ 4,665,557

A complete copy of financial statements audited by Barnes, Givens & Barnes, Ltd. is availableA complete upon copy of request financial statements from the audited Dystonia by Barnes, MedicalGivens & Barnes, Research Ltd. is available Foundation, upon request One E.from Wacker the Dystonia Drive, Medical Suite Research 1730, Foundation, Chicago, One E. Wacker Illinois Drive, 60601. Suite 1730, Chicago, Illinois 60601.

16 DYSTONIA MEDICAL RESEARCH FOUNDATION Statement of Financial Position DYSTONIAStatement MEDICAL of FinancialRESEARCH Position FOUNDATION December 31, 2020 StatementDecember of Financial 31, 2020 Position December 31, 2020 STATEMENT OF FINANCIAL POSITION2020 Assets DYSTONIA MEDICAL RESEARCH FOUNDATION | YEAR ENDING DECEMBER2020 31, 2020 Assets Cash and cash equivalents including segregated ASSETSCash and cash equivalents including segregated 2020 Dystonia Coalition cash of $323,019 in 2020 $ 701,885 Cash Dystonia and cash Coalition equivalents cash includingof $323,019 segregated in 2020 $ 701,885 Investments 5,252,235 Investments Dystonia Coalition cash of $323,019 in 2020 $ 5,252,235 701,885 Unconditional promises to give 33,481 InvestmentsUnconditional promises to give 5,252,23533,481 Other current assets 72,614 UnconditionalOther current assets promises to give 33,48172,614 Equipment and leasehold improvements, OtherEquipment current and assets leasehold improvements, 72,614 less $29,605 of accumulated depreciation 11,551 Equipment less $29,605 and leasehold of accumulated improvements, depreciation 11,551 Total Assets $ 6,071,766 Total less Assets $29,605 of accumulated depreciation $ 6,071,76611,551 Total Assets $ 6,071,766

LIABILITIES & NETLiabilities ASSETS and Net Assets Liabilities: Liabilities: Liabilities and Net Assets Grants and fellowships payable $ 816,189 Liabilities:Grants and fellowships payable $ 816,189 Accounts payable and accrued expenses 66,576 GrantsAccounts and payable fellowships and accrued payable expenses $ 816,189 66,576 Deferred rent payable 108,925 AccountsDeferred rentpayable payable and accrued expenses 108,925 66,576 Deferred revenue 91,500 Deferred revenuerent payable 108,925 91,500 Dystonia Coalition agency liability funds 323,019 DeferredDystonia revenueCoalition agency liability funds 323,019 91,500 Total Liabilities 1,406,209 Dystonia Total Liabilities Coalition agency liability funds 1,406,209 323,019 NETTotal ASSETS Liabilities WITHOUT DONOR RESTRICTIONS 1,406,209 Net assets without donor restrictions: Undesignated 1,384,156 Net Undesignated assets without donor restrictions: 1,384,156 Board designated for science 1,500,000 UndesignatedBoard designated for science 1,384,1561,500,000 Total net assets without donor restrictions 2,884,156 Board Total designated net assets forwithout science donor restrictions 1,500,0002,884,156 Net assets with donor restrictions: Net Total assets net with assets donor without restrictions: donor restrictions 2,884,156 Purpose restricted 1,781,401 Net Purpose assets restricted with donor restrictions: 1,781,401 Total net assets with donor restrictions 1,781,401 Purpose Total net restricted assets with donor restrictions 1,781,401 Total Net Assets 4,665,557 Total Total Net net Assets assets with donor restrictions 1,781,4014,665,557 Total Net Assets 4,665,557 Total Liabilities and Net Assets $ 6,071,766 Total Liabilities and Net Assets $ 6,071,766 ADMINISTRATION 8%

ADVOCACY 4% SPECIAL BEQUESTS 1% EVENTS MEMBERSHIP 14% & SUPPORT 6%

SCIENCE FUNDRAISING DONATIONS & GRANTS 53% 12% 85% AWARENESS & EDUCATION 17%

REVENUES EXPENSES 17 Board of Directors Mark Rudolph, Treasurer Billy McLaughlin Samuel Belzberg Awareness Ambassador, Jon Davis, Director (1928–2018) Co-Founder ex officio John Downey, Director Frances Belzberg Janet Hieshetter Honorary Chairperson Donna Driscoll, Director Executive Director, ex officio & Co-Founder Marilynne Herbert, Director Community Stanley Fahn, MD Erwin Jackson, PhD, Director Leadership Council Lifetime Honorary Director Ginny Bryan Stefanie Jackson, Director Art Kessler Beth S. Farber President Dennis Kessler, Director Karen A. Flanagan James A. Metherell Rosalie Lewis, Director Richard A. Lewis, MD Melissa Phelps Vice President of Science Allison London, Director Shanna Schmitt Rosemary Young Barbara Kessler Liz Rawson, Director Vice President of Awareness Dystonia Dialogue & Education Diane Rudolph, Director Editorial Board Karen K. Ross, PhD Paula Schneider, Director Barbara Kessler, Chair Vice President of Support Pamela Sloate, JD, Director Ed Cwalinski Paul Kavanaugh Carole Rawson Mahlon R. DeLong, MD Dee Linde Vice President of Public Policy Lifetime Honorary Member, Allison London Scientific Director Emeritus, Ronald Hersh Anneliese Ornelis ex officio Vice President of Development Diane Rudolph Sandra Weil, Network Liaison Joel S. Perlmutter, MD Paula Schneider Scientific Director, ex officio Todd Spotti

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

18 Medical & Scientific Advisory Council Mahlon R. DeLong, MD Niccolo Mencacci, MD, PhD Scientific Director Emeritus Northwestern University Emory University School of Medicine Jill Ostrem, MD Joel S. Perlmutter, MD University of California, San Francisco Scientific Director Terence Sanger, MD, PhD Washington University School University of Southern California of Medicine in St Louis Christian Schlieker, PhD Nicole Calakos, MD, PhD Yale University Duke University Aasef Shaikh, MD, PhD Jean-Francois Daneault, PhD Case Western Reserve University Rutgers University Roy Sillitoe, PhD Michelle Ehrlich, MD Baylor College of Medicine Mount Sinai School of Medicine Veronique VanderHorst, MD, PhD Alfonso Fasano, MD, PhD Harvard University Toronto Western Cynthia Comella, MD - ex officio Jesse Goldberg, MD, PhD Rush University Medical Center/ Cornell University Dystonia Study Group Mark Hallett, MD H.A. Jinnah, MD, PhD - ex officio National Institute of Neurological Principal Investigator, Dystonia Coalition Disorders & Stroke Codrin Lungu, MD, Federal Liaison Ellen Hess, PhD, Emory University

Clinical Fellowship Program Committee Susan Bressman, MD Hubert Fernandez, MD Mount Sinai Beth Israel Cleveland Clinic Cynthia Comella, MD Mark Hallett, MD Rush University Medical Center National Institute of Neurological Disorders & Stroke Mahlon R. DeLong, MD Emory University School of Medicine Joseph Jankovic, MD Baylor College of Medicine Stanley Fahn, MD Columbia University Medical Center 19 The DMRF wishes to acknowledge the generous gifts received in memory of the following: Nikki Abramson Rita Flanagan Thom Joyce Betty Rudolph Louis Amato, Sr. Jean Flynn Tammy Karen Iris Salter Ken Anderson Marjory Jean Flynn Katherine Kaye Jackie Schneider Stewart Babb Rosemary Frassetto Mattie Kemp Judy Semes Ruth Bader Ginsburg Ed Frates Don Kessler Jimmy Serrett Sara Bakst Pete Frates Miriam Kimmelman Janet Rose Shaw Basya Rochel Bas Clare Frees Cynthia Kirwan Sidney Sherrin Shmuel Hirsh obm David Funt Leonard Koll Matthew Simmons Jerry Bassininski Joyce Ann Galloway Stephanie Kopec Maita Simon Karen Bean Elizabeth Gay Paul Kovacs, III Donald Sisolak David Belsky Robert Gay Douglas Kramer Robert Skigen Samuel Belzberg Norman Gebeloff Florence Kramer Sue Skigen Michael “Beno” Benoit Edward M. Genson Gene Kramer Sam Slepian Faye Bernstein Mary Rita Geraghty Seymour Krinsky Martin Sloate Ernest Bersami Randy Gestrich Armand Lavallee Tim Smith Karen Blacksburg Robert Gilbert Laura Lewis Curt Smookler Leo E. Boisvert Vera Gilbert Phillip Marshall, Sr. Steve Sowka Dr. Gerald Bowling Pearl Goldsand Elizabeth McClure Caroll Spinney Phyllis Breit Arlene Golebiewski Helen McCulla Addie Stokley Willie Robert Brown Shirley Goodno Vincent Paul Migliore Dick Stuart Beverly Brownstein Joyce Greenberg Joan Miller Josephine Susini James R. Bulmer Art Greenfield Shoshana Munzer Stephen K. Sverid Ian C. Campbell Carroll Greenfield Ronald Nash John Symonds Natalie Caplin Katharine Gugliuzzi Frances Newberg Sara Teller Jane Meads Cassin Patrick Gutierrez Jerry Newberg Almira Tensuan Joseph Choroser Bruce Hainsfurther Daniel Newmahr Owen Thompson Carrie Conroy Leon Handler Milton Okun Willard “Tommy” James Cooksey Christopher Harris Marilyn Ortsman Thompson Paula Cooper Jeff Harris Nettie Pancik Ian Thomson JoAnna Craig Marie Harris Aleksandra Passarello Virginia Thrower Mary Crompton Martin Hart Brent Petri Tuvia Velvel ben Meir obm David Cullinane Robert Hart James Scott Pierce Debbie Wasserman Hal Davis Michael Hausauer Shirley Prosnit Marilyn Wasserman Eulinia “Nini” Del Rosario Gloria Heisdorf Nancy Pusch Rob Weil Marcella Doyne Stuart Hess Anthony ‘Tony’ Putz Elaine Weinberg John Earnisse Lillian Leona Hietther Sylvia Radov Mellissa Williams Harriett Farber Mary Ann Hohenstein Jesse Paul Reichman Denise Withrow Shari Farber-Tritt Roberta Ann Hopper Edna May Rinaldi Hamp Wolfe Roslyn Feigenbaum Gold Terry Horowitz Annie Ritsch Allan Womac Mark Feldman Pamela Houck Patricia Roix Elizabeth Zimmermann Morty Fine Barbara Hughes Slava Rozenfeld George Zucker Beverly Fitzgerald Franklin Jones Steven Rozenfeld

20 Virtual Dystonia Zoo Day 2020 $25,000 or More Elaine and Robert Baer Matthew Dennie Allergan, an AbbVie Company BelaCoop Animal Hospital and Jason Epstein Ipsen Biopharmaceuticals, Inc. Beauty Bar of North Park Sally and Michael Ernstberger Merz Therapeutics Frances Belzberg Alice Dale and Franklin Evans Wendy Bloom and Arthur Kessler Carrie and Greg Fehlberg $5,000 to $9,999 Bowser Automotive Edward Foley, Jr. Timothy Esson Kay Boyd Abby and Michael Friedman Kathleen and Timothy Flanagan Judith and Richard Bryan Nancy and Thomas Garson Nancy and Joel Goodman Lisette Bunting-Perry, PhD, RN The Goat Farm Petroleum Terminal Abigail Peterson R. Barry Casler Mindy and Michael Goldberg Terri and Charles Chapman Betsy Goldin $2,500 to $4,999 Kristin Cinglie and Paul Ivankovics Cindy Greenfield Barrow Neurological Institute East River Energy, Inc. The H Group, Inc. June and Ron Hersh Ann and Joseph Falci Janet Hieshetter and Eric Greenberg Robin and Bud London Jennifer and Seth Goldman Lisa and Steve Katz The Madison Square Garden Judy and Geoffrey Handler Jamie and James Kayler Company Marilynne Herbert Timothy Keegan Medtronic, Inc. Elaine Igelman Norie Knezetic/K Creative Group, Inc. Mount Sinai Hospital Impact HVAC Krebs Chrysler Dodge Jeep Ram Supernus Pharmaceuticals, Inc. Interpretations Dance Academy Lago Flats, LLC Barbara and Dennis Kessler Jennifer Lehon $1,000 to $2,499 Ellen and Ronald Kisner Maureen and Chris Lehon Nancy and Rick Baer Kristina Kittilsen and Steve Weller Tricia Levin Tracy and Bruce Bahn Lori and Jimmy Krantz Eric Levine Columbia University Irving Medical Meryl and Joseph Levin Jamie and Gary Litt Center Movement Disorders Division Tricia and Brian Lewis Lizzy Markus Jonathan Davis Violet Livshiz Julie Mendel Reinhard Andrea and Robert Greene Debbi and Steve Melzer Paulette Mondschein and Jacquelyn Haughey Maria and Terry Mullen Kenneth Garrett Delores and Jack Heilmeier Charlotte Pokoik Cindy and Bill Nibur Henry Ford Neuroscience Institute Jil and Jordan Schaps Eileen Nyberg Impact Networking Carol and Ken Schwartz Lily and Jon Otis Allison and Dan London Marisa and Tomer Seifan Lenore Petteruti and Edward Kopko Emily and Thomas McNaughton Roberta and Arnie Ursaner Tara Prigmore Asif Ramji Weill Cornell Medicine Department Tonya Sapre Carole and Doug Rawson of Neurology Robin, Ashley and Donald Schober Revance Therapeutics Inc. 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Lenore Kramer Hope Nightingale and Dystonia Virtual Dog Walk Stefanie and Erwin Deborah and Roger Lebbin David Ellis Laura Cobb Jackson, PhD The Marshall Charitable Liz Rawson The Coffman Foundation Allison and Dan London Foundation, Inc. J. Paul Reichman Art Columbia University Irving Philip and Jennifer Maritz/ Emily and Thomas Museum Trust Medical Center Movement Peak View Foundation McNaughton Gail and Saul Rudo Disorders Division Carole and Doug Rawson Medtronic Foundation Kay and Steve Shraiberg Carol and Joel Davis David M. Rudolph Employee Giving Supernus Pharmaceuticals, Inc. Jan and Charles Davis Research Fund Charitable Program Joann Gerardi, PhD/ Constance Deng MG O’Neil Foundation Alexandra and Martin Nicholas Diamand $10,000 to $24,999 Carole and Gerald Miller Symonds Foundation, Inc. Dominion Foundation David and Dorothy Brennan/ Chong Hui and Terry Neville Nancy and Bruce Thayer Florence K. Ferguson and Brennan Family Foundation Ruth Nussdorf Carrie and Stanley Valiulis E. Michael Shine Dr. Irving S. Cooper Abigail Peterson Anna Voytovich and Betty Fitzpatrick Family Foundation Judi and Jay Robinovitz Steven Rudolph Doreen and Todd Gelfand Nancy and Joel Goodman Estate of Harold Seldes Binbin Wang and Aaron Lewis Google, Inc. Kelly and Brian Keane Pamela Sloate Linda and David Westfall Josh Gordon Diane and Mark Rudolph Arlene and Robert Subin David Wiggins Ellen and Jay Gordon 22 Julie Greene/HSN Cares Russell Phillips, Jr., CPA, Axis Capital Dani Fingard/Dish for Dystonia Stacy and Allen Groner CVA, MAFF Bachmann Strauss Family Nancy Fischer Donna and Dave Haney Rita and Andy Rabin Fund, Inc. John Gentry Eric Harmon Asif Ramji Elaine and Robert Baer Vicki and Ernie Ginter, Jr. Delores and Jack Heilmeier Krista and Ronald Reed Mary Ann and Richard Baker Carol and Peter Goldman Henry Ford Neuroscience Revance Therapeutics Inc. Bancroft-Tubbs Family Fund Jennifer and Seth Goldman Institute Leslie Richman at the Rochester Area Judy and John Green Robert Herkenhoff Sarahmay & Larry Robbins Community Foundation James Gregory The Hershey Company Nancy Roth BelaCoop Animal Hospital Diane and David Grossman Janet Hieshetter and Rubens Family Foundation and Beauty Bar of North Park Martin Gutenplan Eric Greenberg Christopher Salazar Denise and David Boente Teresa and Lawrence Hamdan Maureen and Raymond Hiller Samsung Bowser Automotive Judy and Geoffrey Handler Heather and Martin Holford Tammy and Robert Sanders Kay Boyd Delores and Gordon Hansen HSN, LLC Susan Saril Karen Brown Deborah and James Harlow Amanda Huene Michele Schuster Buffalo Bills Jacquelyn Haughey Elaine Igelman Ronald Schwartz Donna and Dan Bunten Stacey Henderson Impact Networking Sylvia and Donald Simon Drs. 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Company Craig Koshkarian Margaret McCulla Scott Weisman/Dish for Kenneth Davidson Melanie and Randolph Kraft Judilynn and Jim McDermott Dystonia Barbara and Michael DeLouise Jennifer Krajecki Emily McNaughton/Dogs for Gail West DMRF Greater New York Lori and Jimmy Krantz Dystonia Virtual Dog Walk Sherry and Douglas Whitley Chapter The Kresge Foundation Microsoft Giving Campaign Mary J. B. Work Fund of the DMRF South Carolina Richard Kunin Brenda and Lee Moss/ Community Foundation Support Group Miles Lazerwitz, DDS The Erdle Foundation, Inc. Kathy and Mike Worley Florence Duggan-Bayne Norma and David Lefkowitz Suzanne and Brendan Patricia and W. Dan Wright East River Energy, Inc. Lucy and Kenneth Lehman Mulshine Robert Yarnovich Marcia and Richard Eisenberg Kasey and Todd Leinbach Henry Nissley Margaret and Leon Ellin Meryl and Joseph Levin Fredelle and Martin $500 to $999 David Ellis Elaine and Shaul Levy Ohlhausen Actionable Insights, LLC Mark Englund Dee Linde Stacey and Mark Overton Barbara and Robert Adelstein Doris and Stephen Faber Ira A. Lipman Foundation Lori and Joel Oxman, PhD Steve Alexander Stanley Fahn, MD Violet and Michael Livshiz Maddie Paolero/Dogs for Allegheny Health Network Ann and Joseph Falci Amanda Lockhead/Nashua Dystonia Virtual Dog Walk Anonymous Michael Fanelli Dystance4Dystonia Walk Felice Axelrod Joel Farber 23 Christopher Lorenzen Marisa and Tomer Seifan Alexandra and Michael Bassik Matthew Dennie Peggy Macmillan Lynn and Jim Shaffer Drew Bates Dale Dirks John Jay Mann Cliff Sheets Rita and Guido Battaglini Elizabeth Zimmerman Foundation, Inc. Stephen Shyne Mary Ellen and Michael Donaldson and Jeffrey Dale Martin Leslie Siegel Battipaglia Donaldson, MD Joanne Matuzas Pamela Sloate/The Martin DeAnne and Dan Bean Francine Donner Leona Weiss McCargar and & Roberta Sloate Dystonia Rhonda and James Beane Janet Drier Scott McCargar Research Fund Helen and Rick Bemporad Donna Driscoll Laura and Curtis McGiffin St. Philomena School Inc. Erica Bender Douglas Dudgeon Arlene Meintz Ronna Stamm and Patricia Biedess Maureen Eaton Wayne Mellon Paul Lehman Jill and Barry Blacker Regina and Gregory Eitzen Debbi and Steve Melzer Phyllis Strauss Bloomberg LP Pat Englebretson Nick-E Mershon/Dogs for Patricia Swanson and Shirley and James Blue Jason Epstein Dystonia Virtual Dog Walk Ivan Clatanoff June and Brian Boyd Sally and Michael Ernstberger Cindy and Thomas Metherell Cindy and James Tanner Sheila Bradley Frances and John Evers James Metherell/Toss for Susan Thomas Marjorie Brandenburg Bradley Ezratty Dystonia Joan Thompson Carole and John Brigham Janet Fairbank Nan and Howard Miller Laura and Raymond Tubridy Cheryl Brodley Jessica Feeley/Dogs for Maria and Terry Mullen Roberta and Arnie Ursaner Dorothy and Roger Brooks Dystonia Virtual Dog Walk Jane and Mack Murphy Loretta Wallis Jeffrey Brown Carrie and Greg Fehlberg Deborah and Robert Myman Weill Cornell Medicine Joe Brown Rhona and Leonard Shannon Nash Department of Neurology Bernard Brownstein Feigenbaum National Fuel Gas Company Julie and David Weisman Tonette Burbidge Jonathan Fey Foundation Steven Williams Yvonne and Thomas Carney Julie Fire New Directions Foundation Susan and David Williamson CDW Corporation Ann and George Fisher Jeanne and John O’Connor Cleveland Wingate Parichat Chaiya and Flanagan Family/Dine Betty Oliver Karen Winter Christopher Taylor for Dystonia Gloria and Ron Petri Wolverine Packing Company Lori Cisneros Sara Flohr Patrice and Jeffrey Pierce Patricia Ziner Helen Coleman Edward Foley, Jr. Charlotte Pokoik Jennifer and Paul Colone Gayla Forbes and Hal Forbes Jill Povol/Dish for Dystonia $250 to $499 Constellation Energy Group/ Rebecca Freligh Nancy and Larry Present Abbott Exelon Foundation Abby and Michael Friedman David Ramirez Mary Jo Abbott Cresczentia and Barry Cook Leah Garrett/Dogs for Barbara Raub Ralph Acquaro Bernice Corman Dystonia Virtual Dog Walk Brenda and Charles Reavis Freyda and Jeffrey Albin Patricia Costello/Dogs for Nancy and Thomas Garson Diane and Evan Renz Jennifer Alfonsi/Law Office of Dystonia Virtual Dog Walk Lisa Germano Tande Richardson Siracusa JB Bieske & Jennifer Alfonsi Jenna Countryman Jennifer Getchell Nancy and Sandy Richman Ann and James Allen Carolyn Cruz Ellen Glaessner Patricia Roix Dorothy Almanza Mary and Edward Curvey The Goat Farm Petroleum Maxine and Gerald Rosen Virginia Ames Emily, Rosemary and Terminal Robin Rosenzweig Ruth Anderson Jacques Dahlstedt Mindy and Michael Goldberg Jill and Randy Roush Apple Creek Kennel Alice Dale and Franklin Evans Betsy and David Goldin Carol Rowberg Sandra Aresta and Donna Dant Anne and Jack Goodman Edward Rudolph Michael Katz Deborah and Douglas Darby Deborah and Michael Gordon Adrienne Sabora/Dish for Judy and Tom Aronson Amy Davidson/Dogs for Barbara and John Gottlieb Dystonia Mary Atwell Dystonia Virtual Dog Walk Ronald Greenberg Jil and Jordan Schaps Mr. and Mrs. Henry Austin Caroline Davidson Cindy Greenfield Shanna and Brad Schmitt Joy and Avi Avidan Katherine Davis GreenState Credit Union Paula Schneider Lauren and David Aviram Sam Davis Honi and Dennis Greenwald James Schoenadel Bank of America Charitable Marcia and Kenneth Denberg Sheri Grube Carol and Ken Schwartz Foundation Jason Guarino/Jeans Day 24 Abby and Neil Gurevitz Andrea and Steven Lurie Tara Prigmore Rebecca and Collin Stuart Elaine Guthrie and Patrick Lynch Laureen Primmer Donna and Glen Suiter Michael Guthrie Lizzy and Bryce Markus Lisa and Daniel Rabe Peggy and Jim Swartchild The H Group, Inc. 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Patricia and John Pace Eric Slaasted/Nini Del Annette Wilson Krebs Chrysler Dodge Estate of Stanley Pahota Rosario Fund Peggy and Bill Wise Jeep Ram Judy Pap Larry Smith Lloyd Wittenmeyer Kroger Bharti and Raman Patel Thomas Smith James Wood Johanna Krolopp Mary and Jerry Patton Karrie and Alan Smookler, MD Melissa Wright/Dogs for Lago Flats, LLC Jill Pazolka Nancy and Steve Sohn Dystonia Virtual Dog Walk Helen Lamont John Pazolka Tiffany and Hyperion Jesse Wychules Mark Langwerowski Mary Pearsall Solomon Terri and Steve Wynne Susan and Craig Larson Joel Perlmutter, MD South Bay Ford Laurie and Gary Yarnell Jeanne LaVana Susan Pestine Debra Spinney Alana Zinn and Jeremy Beyda Jennifer Lehon Julie and Robert Peterson Larry Stahl Bonita and Michael Zurek Maureen and Chris Lehon Lenore Petteruti and Patti and Dan Stein Tricia Levin Edward Kopko Sherry and Jeremy Steinfink $100 to $249 Samantha and Eric Levine Kathleen and Peter Pflock Susan Steinfink Deborah Aberbach Meg and Daniel Lewis Rita Pink and Jim Heinsimer David Stone Beth and Larry Abney Liberty Mutual Insurance Margaret Powell Mary Specker Stone and Craig Abod Laura and Mark Lieberman Sally and Frank Presti John Stone Darrow Abrahams Jamie and Gary Litt David Preston Ira Straff Aetna Foundation, Inc. Nora and Richard Luca Katie Stuart Barbara and Robert Agdern 25 Loraine and James Ahearn Janet Beger Roberta and Seth Borg Susan and Paul Carroll Erdal Aksoy Robert Beglin Lisa Borowitz Penney and Dennis Carruth Maria Albanese Sheryl Begoun Martha Bosch Vanderkolk Dolly and Thomas Cassidy Judy and John Alldredge Felicia and Irv Beitler Dr. Agnes Bowling Jacqueline and James Cerqua Veronica Amato Diane and Joe Belkevich Therese and David Boyer Cheryl and Joseph Champlin American Express Foundation Sara and William Belkov Charles Boyle Christopher Chapman Lillian Ammerman Enid Bell Barbara and Richard Bradley Susan Cheney and Emory Anderson Ginger Benes Mary Brady David Arbeit Jeanne Anderson Jo and Larry Benesi Dianne and Marc Braer Mary Jo Chiapelli Mary Anketell The Benesi Family Jessica Bragdon Linda and Harold Chizewer Anonymous Janet and Marvin Benjamin David Cristopher Bragg, PhD Sung Hee Choe and Ann Appelbaum and Elyse Benton Jean and Lowell Braxton Adam Ring Neal Borovitz Brian Benvenuti Mrs. Eugene Bray Nancy and Dennis Chojecki Diana Arana Patricia and Andrew Beran Sharon Brello John Cina Maria Aresta Zelda and Sol Berger Olivia and Norman Brenner Joyce and Kim Cinglie Robin and Bijan Armandpour Rayzella and Frederick Berko Brian Bridegum Rebecca Cinglie-Fahrer Hans Arnesen Naomi Berkowitz and Deborah and Mitchell Brin, MD Susan Ciolek Robert Arnold-Simons Sean Berkowitz Henra Briskin Maria Cirnaru, PhD Laurie Arnow-Epstein and Brian Berman, MD, MS, FAAN Marjorie Brooke Patricia Coburn-Hintze and Sam Epstein Helene and Roger Berman Michael Brougham Kenneth Hintze Barbara and Judy Asazawa Linda Berman and Gail Brown Jacquelyn Coello Jenn and Rob Ashcraft Paul Abramson Gregory Brown Cheyenne Cohen Assurant, Inc. Jackie and Richard Bernard Karla Brown Elaine Cohen Kathleen Ausley Arlene Bernstein Craig Brubaker Lenora Cohen Sue and Bob Austin Suzanne and Tim Bernstein Nancy Brudelie Nancy Coleman and AWH Holdings, Inc Anthony Bertuca Debra Bruno-Walk and Paul Pitkoff Bernardine Baca Spiers Charles Biener Peter Walk Margaret and Frank Colone Marie Bacher Ann Bikales Bernice Bryan Robert Colosi Sheila and Peter Badal Kaye Bishop Don Buchal Julaine Condon Matthew Baden Joanne and Peter Blaauboer Jennifer Budryk Ellen, Caitlyn and Alice and Marvin Bader Frances Blackman Mary and Paul Buenger Marc Connelly Amy Bailey Julie Blackman and Margaret Bulmer Mary Conte Brianna Bak Mitchell Dinnerstein Wendy Burckhardt Karen and Charles Conway Ethel Baker Natalie Blake and Suzanne Burge Kay Cooksey Cindy and Jack Balcolm Steven Schwartz Margaret and Richard Burton Donna Cooper Susan Baldwin and Twila Blankenship Tracy Buseman-Carlstrom Lindsay Cooper Gary Gepner Joe Blanton Fonda and Rendell Butler Manori Cooray-Weerarathne James Ballerstein Susannah Blanton Shawn and Richard Butler Carol and Herb Corbin Barack Ferrazzano Kirschbaum Brian Bledsoe Kathy and David Buyansky Debbie Cosgrove & Nagelberg LLP John Bliss Nancy Byl, PhD, PT Patricia Costello and Donna Barclay Rosemarie and David Blum Candice and Gregory Caisse Frederick Plaisted Jane Barlow Julia Blumberg Dorothy Caldwell Barbara and Martin Cotler Carl Barrett Blunt Slocomb, Ltd. Deborah Calo Vivian and Gerald Coutinho Elizabeth and Peter Barrett Julie and Jonathan Bobb Terri and Dennis A. Darcy Cox Margaret and Thomas Bartsch Gail and Cleve Boblitz Cammarano Sharon and Warren Craig Diana and Kenneth Bauer Dagmar Bocchi Patricia and Patrick Campbell Nebra and Jacob Crane Emily Cyndy Bauer Diane Bomgardner Monique Canonico, DO Brenda Crawford Cathy Bazeley Eileen Bonfield Jac Caplin Patricia and Curtis Crider Ida Beam Ryan Bonfield Michael Caravello Patience Croll Christine and Jay Beattie Donna Boone Sheila Carney Nancy Cuccato David Beck Myra and Robert Carrier Sarah Cuellar 26 Terri and Barry Cummings David Dzewaltowski Darren Fields Denise and Bill Gibson Charles Curiano Molly Dziedzic Debra and Dan Fields Judith Gibson John Curry John Easterling Ardis Finch-Erath Louise Gibson Myrna Curtis Joyce Darlene Eaton Diane and John Fiore Gail and Bruce Gilberg Edward Cwalinski Rae Edelman and Nicholas Los Eric Firer Emma Gilbert Edward Cwalinski/Dogs for Scott Eggener Michael Firer Penny and Mark Gillette Dystonia Virtual Dog Walk Sandra Egli First Presbyterian Church David Gillman Margaret Davanzo Brooke and Kenny Ehrman at Caldwell Mary Gilroy Patricia Davenport Mary Eilbacher Bonnie Fischer Matt Giovinazzo Benjamin David Janis Eiler Monna and Danny Fisher Cindy and Neal Gittleman Edith Davidson Nancy and Mike Eisenstadt Grace Fisher Tracy Glaser Jacqueline Davidson Anne and Arne Ekstrom Myrna Fishman Deborah and Robert Glass Danny Davis Joyce and Donald Eling Gale and Tim Flanagan GlaxoSmithKline Foundation Deborah Davis Dorothy and Edward Lynn and Saul Fleer Joan Glennon Joallen and Carl Davis Engelken Lisa and Michael Florjancic Bonita Gnecchi Lezli Davis Sarah and Charles Enzor Carol and Luther Flynn Brenda and Howard Goffen Linda Davis and Michael Davis Cynthia and J. Michael Erdey Carol Fontaine Tara Gohr Maria and John Davis Pamela Erickson/Dogs for Irene Forbes Sarah Goldberg Denise Davison Dystonia Virtual Dog Walk Peggy and Donald Foster Gail Goldman David Day Pat Erickson Mary Jo Fowler Judith and Alfred Goldman Cristina De La Ossa and David Erlebach Bonnie Francis Lauren, Matthew and Hector Fabio Salazar Irene and Carl Ersing Bette and Louis Franke Alexander Goldman Lorraine DeFreita Joanne Ethe Barbara and Joseph Freda Craig Goldsmith Jeanne DelSignore Jean Evans William Free Gail and Donald Goldstein Reed and Beverly Deluca Richard Evans Kimberly Freeland Tahli and Eric Goldstein Ed DeMatteo Ezra-Habonim The Niles Melissa Frey Carlos Gonzalez Kathleen Dennick Township Jewish Mary Friedel Jill Renee Good Stacie and Richard DeSalvo Congregation Meredith Friedman Alice Goodman Steven Dickinson Susan and Chuck Fallon Lenora Froebel Bouchey Julie Goodman Loretta Dimuro and Anna Faraguna Gary Fromowitz Jessie Gould and Ron Barrel Manuel DaSilva Beth Farber and Steve Laser Donna Fullerton Dianne Grant Dinello Family Foundation Caryn and Steven Farber Lynn and G. Jeffrey Fullerton Sally and Alvin Green Lauren Dinner Virginia Farley Judy and Mel Gabriel Sondra and Ted Greenberg Michelle Dionne Mary and William Farr James Galli Mary Greene Linda and Edward Docks Linda and Ronald Faul Marilyn and Paul Galli Susan and Adam Greene Laurie and Patrick Dodd JoAnn Favia Paula Galvan Hedda Greenfield Dog Bandanas Creations Olivia Fehlberg Amy Gannon Zee Jay Greenspan Amy and Ira Dolnick, DDS Rachel and JJ Feifer Stephanie Gardner Barbara and Robert Jim Donovan Michael Feinberg, MD Doris Garlich Griffith, MD Christina Donzelli Theodor Feinstat Daisy and Dan Gary Monique Groulx, PhD Cheryl and Mark Downing Michael Feinstein Jordan and Daniel Gaspar Sandra and Jason Guarino Judith and Sydney Dromgoole Ann Feldman Christine Gaupman Margaret and Stephen Joan and Dennis DuBose Annemarie Feldman Beth Gauthier Haddad Sabrina Duley David Feldman/Dogs for Margaret Gayson Philip Hadfield Nicole Dunkle Dystonia Virtual Dog Walk Myra and Stephen Geffner Pamela Hail Judy Dunleavy Lori Feldman Janet and Thomas Gensert Kathleen Haitz Debbie Durrer and Michael Feldman Donna and James Geraghty Elizabeth Halayko Richard Fantozzi Elizabeth and Pavel Feldstein Jacqueline and Andrew Dan Hallagan Richard Dwyer Diane and Raymond Ferland Germanow Ron Hallagan Sandra Dwyer Kristen Fessele Donna and Edward Gewirtz Timothy Hallagan Daniella and Jeff Fiala Ann Gibson 27 Virginia Hamilton Jean and Lysle Hollenbeck Charlotte Kaiser Jessica and Barry Kraver Sharon and David Hampton Paul Hollis Rhoda Kamine Paul Virginia Kreiner Arthurene James Haney Robin Holloway Lindsey and Jeremy Kanefsky Lynn Krejci Stella and John Harbilas Judith Homer Miriam Kapfer Carol and David Kroot Laura Harrington and Nancy and Albert Homiak Carole and Alan Kaplan Barbara Krzyzek Irving Steinfink Dianna Horn Daryl Kaplan Ralph Kuhn Elizabeth Harris Virginia and Timothy Hornsby Valarie Karas Sandra Kurivial Leslie Harrod Sandra and Richard Jean Karls Sandra and Kenneth Kuska Renee Hart Houseworth Austin Kashat Anne Lackritz and Victor Pita Todd Hart Patricia and John Howlett Diane Katz Marianne LaGrange/Dogs for Barbara Harte Christine and Kenneth Hudson Dyan Kaufman, PhD Dystonia Virtual Dog Walk Carol Harwell Nancy Hudson Anne Kavanagh Marianne LaGrange Denise and Stephen Harwood Lindsay Hudson-Austin Joseph Keegan Gail Lande Debra Hass Debra and Terrill Hughes Margaret Keegan Susan Landsman Dorothy Hauff Lisa Hughes Laurie and Charlie Keenan Savanna Lange Lauren and Marc Hausman Patricia and Anthony Hyland Gail and Mark Kelley Judith and Deno Langis Elizabeth Havens Rebecca Ickert Pam Kent Becca and Daniel Langsam Elizabeth Havens/Dogs for Judith Ingelido Kathleen Kerns Michelle Langston Dystonia Virtual Dog Walk IQVIA, Inc. Carrol Kerrigan Nicole Lanier Sarah and Thomas Hay Judy Isenberg Joyce Kessler Phyllis and David Lapin Gloria and Gershon Hayat Marie Iska Marilyn and Mark Kessler Cathleen and Lesley Lascari Janella and Tom Hecker Beth Israel Sharyn and Ronald Kessler The Lasek Family Stephen Hegner David Israni Sherry and Gary Kidwell Khin Lay, MD Mary Lynn and Joseph Hehl Gregg Jablonsky Karen and Francis Kieltyka Ellen and Michael Leavy Jerome Heisdorf Lisa Jablonsky Cheryl Killham Sandra and John Leavy Ann and Bruce Heller Douglas Jack Sheila Killham Brenda Lederer Beth and Curt Helman Florence Jackson Karen and Craig Mark LeDoux, MD, PhD Posey and Michael Hemenway Gail Jackson Kilroy-Sikkema Frances Lehman Linda and Bill Hendricks Sally and Terry Jackson Gregory Kimm Terry Lehon Cecilia and Paul Hendrickson Vanessa and Marc Jacobs Carolyn and Jerry Kinder Scott Leigh John Hendrickson Neil Jacobsen Richard Kinderman Judith Leinbach Suzanne Henley and Diana and Cody Jacobsen Joel King Debbie and Beth Lennex James Cole Strange Robert Kirwan Leominster Monument Co. Jeanie Herbert Catherine Jacobson Catherine and Steven Kite Barbara and John Leschisin Peggy and William Herman Barbara and Eric Jaffe, MD Debra Kittay and Josh Parker Nancy and Howard LeVant Neal Hermanowicz, MD Denise and Alan Jaffe Karen Klauseger Jane Levine Jennifer Hickey/ Pauline Jakobsberg Linda Klayman Karen and William Levine Dogs4Dystonia Virtual Nancy, Donald and Geraldine and David Kline Sandra Levine Dog Walk Amber Janes Susan Knapp Susan Levy Hills Bank Frank Jansen Connie and Dennis Knautz Johanna Lewis J. Carroll Hitch Teresa and James Joerger Christopher Koczwara Karen and Ben Lewis Lindsay Hittman Judy and Roy Johansen Evelyn, Lillian and Patricia Julie Lieberman Barbara and Brian Hoar, MD Gretchen Johns Koenig Therese Lindquist Betsy and James Hoefen Annette Johnson Cassandra Kopec Robert Lineman Joyce and Timothy Hoerst Maurine and LeRoy Johnson Rhoda and Walter Kopy Elizabeth Linfoot Bridget and Brian Hoffman Raymond Johnson Edward Kormylo Andrea and Stewart Lipson Glen Hohenstein Paul Jones Stephen Korn, DDS Marci and Richie Litt Kathleen Holbrook JP Morgan Chase Foundation Carol Ann Kovic Linda and Howard Litvack Kristina Holland Cynthia Juliano Rosemary Krause Charles Litvin Heather Holland and David Kabat Harriet Kraver Debra Livingston John Jackson Lee Kains Amanda Lockhead 28 Sharon Loguercio Karen and Tim McCulla Brandon Montgomery Theresa Paine Phyllis and Matt London Mary Leigh McDaniel Deanna Moore Christopher Pappas Robert Losik Judy McEvitt Erika Moschetti Raminder Parihar, MD Karen Lostritto Linda McGlasson/Dogs for Karen Moss Anthony Passarello Susan Lotz Dystonia Virtual Dog Walk Lori Moss and Gary Debra and Joel Pasternack Bronlyn Louck Linda McGovern Oltmans, PhD Alleyne and Edward Patrick Cyndy and Pete Lounsbury The McGraw-Hill Companies Martin Moynihan Douglas Patrick Jonathan Love Billy McLaughlin Donald Mudd Julie and Douglas Patrick Lubeck Community Michelle McMullin James Mulqueen Jamie Patton Moerman Baptist Church Kathy McPeters Stacey and Jonathon Munch Michelle Patzke and Barbara Luca Karen and Charles Jill Murano Gary Kaplan Todd Ludwig McPherson Corinne and Mark Murashige Richard Paulson Bernita Lundquist Susan McRae Marilyn Murlowski Pawsitively Devine Michelle Annette Lynn and Pamela Mead Carol Murphy Cynthia Pearl Janet Mae McKay Mark Meany Martha Murphy Vicki and Schuyler Peck Patricia and Randall Mack Cathy Meckes James Murray Linda Pedersen Cynthia Mackelprang Barbara Mehring and Robbie and Ron Nabors Linda Pedersen/Dogs for Macquarie Holdings (USA), Inc. Robert Moran Robbie Nabors/Dogs for Dystonia Virtual Dog Walk Brian Maddux Marjorie Mellen Dystonia Virtual Dog Walk PepsiCo Foundation Teresa Maghes Clara Melman Deborah and Isaac Nachbar Employee Giving Programs Mark Maier Susan and Steven Melvin Joyce Nachbar Alfonso Perez Mary Malone Jahaira Mendez and Lisa Nachbar Elizabeth Perkins Janet Malsan Ariel Mendez Sandra and Robert Nathans Marlene Peroutka The Mandel Foundation Janis and Alan Menken Zita Nathans Patty Perschino Donna Manning Charity Fund MaryRae Nee Aliza and Jason Pestine Roger and Gina Manusov Marylou Menville Lynette and Bruce Nelson Gail Pestine Lila and Ronald March Cindy and Bob Messmer Carl Nemeth Jamie and Matthew Pestine Sheryl Marek Michelle and Wendell Mettey Christina Neri Nancy Petersen Alison Marett/Dogs for Jessica and Aaron Meyer Elaine and Jerald Norton Betsy and Peter Peterson Dystonia Virtual Dog Walk Cynthia Miccio Michael Novak Elizabeth and Randall Geti Margolese Marla Michel Pamela Nulman Peterson Thomas Markert MicroVention Terumo Samantha and Michael Peggy Peterson Markle Gift Fund Sharon and Louis Miles Nussbaum Gary Petrie Carol Ann Marquez Deborah Miller NVIDIA Pfizer Foundation Matching Gina and Carl Marshall Patricia and Michael Miller Patty and Michael Oaks Gifts Program Juliana Martinez-Fajardo Tammy Miller Kevin O’Brien Melissa and Roger Phelps Judith and Glenn Mason V. Milordi-Ashburn and Mary O’Brien Susan Phelps Kathryn Matheson and Paul Ashburn Melba and Norman O’Brien Gail Phipps James MacMillan Joseph Mirabile Shirley O’Connell Barbara and Jeff Piermont Annemarie and Larry Laura Mirkovic Christina and Jeremiah Jane Piro Matthews Deborah Mitchell O’Connor Joel Pisetzner Alana and Ricky Max Sally Mitchell Paula Okolowicz Hallee and Dave Pitter Myrna and Edward Mazur Janet Mittel Helen Okunak Catherine Plank Carol McAleer Elaine and Bob Molnar Judith Omidvaran Daphne Plaut and David McCarthy Jeanne Moltke-Hansen and Diane and Richard Opperman Jeffrey Showell Margie McCoy Harry Schenk, III Megan Opsahl Alison Plotnik Mary Kay McCoy Anna and Randall Moncrief Rona Ostfeld Lynn Pollack Rick McCracken Janell and Gary Monetti Goly Ostovar and Lee Pollan Clare McCulla Michael Mongon Paul Rickerson Barbara Pollard and Jim McCulla Jason Monroe Mikko Paakkola Mitch Stein John McCulla Jan Monson Martha Pollard 29 Nancy Porter Michael O. Roberts Jennifer and Scott Schaefer Michael Slaasted Timothy Potopa Kim, Kathleen and Susanna and Noah Schankler Laurie and Rick Sleeper Jill Povol Terrance Robinson Susan Schettle Mitchell Slepian Cathy and William Powell Mr. and Mrs. Elmer Robinson Pat and Al Schiazza Scott Sloat Naomi Prell and Sheryl Robinson Sandra Schick Alan Sloate Caroline Pritchard Joyce and Curtis Robinson Miriam Schiffman Madeleine and Rael Slutsky Diane and Robert Pritchard Kim Robinson/Dogs for Donna Schilder Barbara Smith Pete Proch Dystonia Virtual Dog Walk Debbie and Alan Schimming Georgia Smith Jane Prosnit Ellen and Gerald Rodis Donald Schlosser Linda and Douglas Smith Erika Prouty Marcia and James Rohrbaugh Daphne and Joel Schmidt Rheta Smith Barbara Pryor Judith Rolfe Mary Ann Schmit Susan Smith and Neil Steiner Jane and Edmond Purdy Mary Jane and Barry Roma Ann Scholz Gail and Jeffrey Smoulder Carol and David Purdy Jamie and Jon Romick Pamela and W. Winslow Nancy Snideman Delaney Quinn/Dogs for Debra Ronning Schrank Anne and Don Snider Dystonia Virtual Dog Walk Jody Roosevelt/Dogs for Lindsey and Jack Schuemann Maricela and DaCota Soto Sandra Quinn Dystonia Virtual Dog Walk Elizabeth Schultz Allison and Matthew Speiser Helma and Cliff Rabal Suzan and Martin Rose Patricia Schultz Sue Spencer Elizabeth Rabban Barbra and Reid Rosen Jackie and Kurt Schumacher Virginia and Robert Spencer Estelle and Bruce Rabin Steven Rosen Constance Schwartz Barbara Spiri Judith and Maynard Evan Roth Martin Schwartz William Springer Rabinowitz Joyce and Walter Rouba Jill and Donald Scifres Pat and Joe Stam P. and G. Rabstejnek William Rozenwaser Lilian Scott Michelle and David Stanek Nancy Rabstejnek Nichols Linda and Billy Rue Scott Survey, Inc. Karen and Eric Stark Heidi Ramos Ketty Runge Joyce and William Sederburg Susan and David Stein Jeanette Ranallo Maureen Rush Virginia Seidel Jill and Jon Steinberg Kathy Ray Ruth and Jonathan Ruskin Roberta and David Senzel Remy Steinfink Naema Ray Jana Ryckman/Dogs for Kurt Seydow Scott Steinman Margaret Read Dystonia Virtual Dog Walk SFSAFBI Cleveland Bettie and Charles Stephens John Reciniello Adrienne Sabora Surekha Shah Sharon and James Stephens Linda and James Reed Karen and Daniel Sacke Stuart Shalowitz Warren Stern Lynda Reeves Beth Sackman Eric Shapiro Esther and Alan Sternin Sharon Reilly Corrine and Robert Sade Joan and Charles Shapiro Roslyn Sternlieb Karen Reiter Kimberly and Andy Sagor Linda Sharp Nona and Bob Stevens Stanley Reiter Linda and Michael Sahn JoAnn and W. Sheehan Erinn and Katie Stimson Bryan Renehan Sandy and Sammy Sahn Ruth Sheidlower Audrey Stites Melissa Rentfrow/Dogs for Nadine Saitlin Robert Shiff Marta Stoeckel-Rogers and Dystonia Virtual Dog Walk SalesForce Eugene Shifrin Tim Rogers Revive Family Chiropractic Howard Saltzman Laura Shine-Revilock and Virginia Stokley Daniel and Gershom Reynolds Merry Salyers Myah Revilock Nancy and Richard Storey Margaret Reynolds Bruce Sams, MD Sarah Short Laurie Strawgate- Greg Rhoads Eric Sanders Carol and Norman Shubert Kanefsky, PhD and Mary Rhodes Amy Sanford/Dogs for Elaine and David Shulman Paul Kanefsky Esq. Teresa and Craig Rice Dystonia Virtual Dog Walk Michael Siciliano Kathleen Strunk Anna and Joseph Richard Vanessa Santos Villanueva Sheila and Arthur Sieder Nedine Stump Cynthia Richardson Marjorie Sanua Clio and Larry Silman Arlene Sturm Ann Richter Marilyn Saul Shanna Silver Laura Subin and Deb Rielly Phyllis Sawyer Shelley Silver Howard Creskoff Marie and Charles Riemer Susan and Joe Schackman Susan Silver Michael Suida Thomas Rini Elizabeth and Henry Arlene and Charles Simpson Dennis Sundheim Riverside Education Schaedler Natalie Sims Sunshine Kids Inc. Association Philanthropic Jessica Singer and Etan Spira Deborah Suter Benjamin 30 Julia Sutherland Stacy and Erik Van Gunten Christina and James Whorton Leslie Sutton-Smith and Virginia Van Wagenen Diane and Kevin Williams Mark Blackman Gertrude Van Wienen Martha Williams Joe Svejkosky Ruth Vanderburgh Angela and Daniel Wilson Judith and Douglas Swager Shannon and John Mary Ann Wilson Kim, Danielle and Ed Sweeney VanZandt Thomas Wilson Jan Synk Debra and Stuart Varon David Wixted Ferne Szulc Miodrag Velickovic, MD Don Wixted Janice and William Szymanski Melissa and Art Vercillo Marilyn and Howie Wizenberg Marilyn and Jeffrey Tabak Steve Vidal Antoinette and Jeffrey Wolf Robin Tam Maya Vidich Catherine Wollenberg Adam Tattelbaum Peter Vilkelis MacDonald Felicia and David Taubenfeld Dean Villanueva Laura Woods Joanne Tax Joanne Volponi Tara Woods Karla Teitler Emily and Steven Wagshal Julie and Bruce Woolf Tricia, Natalie and Virginia Walker Nancy and Jeff Worthington Judy Tennyson Constance and Craig Wallace Melissa, Ida May and Carli Testerman Dayna Waroe Walter Wright Cathy and Joe Theisen Irvina Warren Carol Wyatt Mary Lou and Kenneth Jerome Wasserman Robert Yandt Theisen Robert Wasserman Paula and Paul Yanoshik Joyce Thielen Elizabeth Watson Anne Yates Michaelene Thillman Diane Webber Kate Young Candace and Bradley Thomas Brittany Weber Laurie and William Young Betty Thomson Nancy Weber Nancy and Stephen Young Patricia Tiemeyer Suranjan Weeraratne Rosemary and Edward Young Janice Tindle Marilyn and Frederick Wegner Tina and Joseph Young William Tinklepaugh Sarah and Paul Wegner Vivian and Marc Zachary Pat and Jerry Tipler Diana Wehner Maureen and Irving Tracy and John Tofanelli Dana and Jon Weinbach Zangwill Mollie and Ken Traub Les Weinberg Talia Zapolanski Fred Treiber Robin Weintraub Debra Zarnay June Tritley Nina Weisbroth and Jordana and Athanasios Linda Troy Lawrence Culleen Zavos CROSSWORD PUZZLE Carly Tubridy Analee and Joel Weisman Honey and Ronald Zeiger ANSWER KEY Elena Tubridy Scott Weisman Anne Zimmerman Wendy and Jeffrey Turk Doug Weiss Dorothy Zoller Horizontal Linda Tuttle Genie Prell Weisz and Andrew Zone 2. Cure Myrna and Neal Tyson Gene Weisz Marie Zuidema 5. Discoveries United Way California Wells Fargo Clearing 8. Support Capital Region Services, LLC 10. Hope United Way of Buffalo and Gail and Gerald Wells 11. Awareness Erie County Robin Welsh UnitedHealth Group Judith and Alan Wertheimer Vertical Terrence Urbanis Karen and Erica West 1. Fellowships US Bank Foundation Kimberly West 3. Movement disorders Victoria Usherenko and Megan Westman 4. Policy Michail Shadkin Marianne Whipple 6. Virtual Jim Vail Allen White, CPA 7. Donors Valley of The Sun United Way Jemma Whittaker/Dogs for 9. Grants Dystonia Virtual Dog Walk 31 1

2 3 4

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Horizontal 2. What the DMRF is committed to finding. 5. Dystonia investigators make these. 8. Helps individuals and families cope with dystonia. 10. The feeling of expectation and desire for a dystonia cure. 6 7 11. Public understanding of dystonia.

8 9 10

Vertical 11 1. DMRF offers these awards to fund clinical training and/or research. 3. Clinical fellows are trained to diagnose and treat these. 4. Legislative advocacy can influence this. 6. DMRF events in 2020. 7. DMRF is very grateful for these. 9. A wards from DMRF to fund a research project.

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