Year in Review 2019
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Dear Friends of HDSA, Are we where we want to be? NOT YET. Are we getting closer? YES! With more hands on deck, we are able Putting all the great advancements in research aside, it is important to improve our tremendous support to be reminded that there are still thousands of families impacted programs even more, such as by Huntington’s disease that are in dire need of support right now. HDSA’s telehealth program, online Although we are excited to report on promising research news — support groups, HD Trialfinder and TABLE OF CONTENTS there is still no treatment for HD and our work is not done. In 2019 helpline — All free. All the time. we worked hard to expand these services to provide world-class HDSA is on the forefront of PRESIDENT & CEO MESSAGE 1 support to families from coast to coast. supporting promising HD research. This year we expanded our Centers of Excellence program to 47 In 2019, we funded more HD science 2019 HIGHLIGHTS 2 facilities and 6 clinical sites across America where more families than ever before including more than can receive expert care. With new Centers in California, Illinois, $1.4 million in direct grants to scientists. We also 2019 REGIONAL EVENT HIGHLIGHTS 14 New York and North Dakota, HDSA now offers care locations in 31 continued to cultivate strong relationships with leading RESEARCH FUNDING PROGRAMS 16 States plus the District of Columbia. This year, HDSA awarded a total bio-pharmaceutical partners. of $1.4 million to the Centers of Excellence program, an almost eleven As our founder Marjorie Guthrie said, “We must continue to 2019 MISSION REPORTS 20 percent increase in funding from 2018. search for HD families everywhere.” Through strategic outreach and Research 22 The Huntington’s Disease Society of America also added new staff engagement efforts, HDSA has generated more awareness than ever Advocacy 23 positions to play integral roles in supporting HD families. In June, before. We are getting more influencers involved who are using their Education 24 we welcomed Allison Bartlett, Esq. to serve as HDSA’s Manager of platforms to bring HD families together and let them know how to Disability Programs. Allison has been able to assist countless families find the help they need. Youth Programs Report 25 through the complex disability process as well as host Disability Chats Support & Services Report 26 Once again, our work is not done, but because of you we are able to provide valuable insight into social security and what is needed for to let HD know — we are never giving up this fight until we are in Disability Programs Report 27 approval. a world free of Huntington’s disease. 35TH ANNUAL HDSA CONVENTION 28 We know youth are a powerful voice in the fight against HD. Young adults and children from HD families continue to be wonderful Sincerely, MISSION & VISION STATEMENTS Inside Back Cover advocates and their passion is never overlooked. However, we knew we needed to create more support programs for youth impacted by BOARD OF TRUSTEES Inside Back Cover HD which is why we welcomed, not one, but two youth social workers to the HDSA team. Thanks to the Griffin Foundation, Katie Dykman, STAFF LEADERSHIP Inside Back Cover LISW and Jessica Marsolek, LGSW are professionals trained to serve Louise Vetter young people and respond to the unique needs of children, teens and President & Chief Executive Officer young adults impacted by HD. 1 2019 Highlights HDSA CENTERS OF EXCELLENCE GROW TO 47 SITES ACROSS THE U.S. HDSA AWARDS INAUGURAL CLINICAL RESEARCH PILOT GRANTS TO FOUR CENTERS OF EXCELLENCE In 2019 HDSA announced that forty-seven out- In December, HDSA awarded four grants under an opportunity for HDSA Center of Excellence Applications for this grant mechanism were open standing Huntington’s disease care facilities with a new research initiative, the HDSA Center of directors and staff to get a new research ideas to all 47 HDSA Centers of Excellence and their six six satellite sites were awarded the designation of Excellence Clinical Research Pilot Program. off the ground. partner sites. Ultimately, grants were awarded to HDSA Centers of Excellence. These grants, totaling $50,000, represent HDSA’s four research teams on the following projects: “I am excited about this year’s recipients because patient-centric research focus by fostering novel This was an increase from 43 in 2018, and from just their innovative proposals could positively impact HDSA Center of Excellence Partner Site at Oregon clinical research projects within the HDSA Center 20 in 2015. The four new 2019 Centers of Excellence the way HD care and counseling are delivered, how Health & Science University, Dr. Amie Hiller of Excellence network. are: OSF HealthCare Illinois Neurological Institute symptoms are treated and how disease progression Measuring Cortisol Levels in Persons (Peoria IL), Sanford Health, (Fargo, North Dakota), These pilot projects will unite scientists with is monitored,” said George Yohrling, PhD, Chief with Huntington’s Disease University of Buffalo (New York) and University of patients through the direct participation of HD Scientific Officer and Chief Mission Officer HDSA Center of Excellence at Rush University California, Irvine. The HDSA Centers of Excellence OSF HealthCare Illinois Sanford Health, families in clinical research. The funding provides at HDSA. Medical Center, Dr. Deborah Hall are multi-disciplinary care teams with expertise in Neurological Institute (Peoria, Illinois) (Fargo, North Dakota) Optimization of Tele-Genetic Counseling Huntington’s disease that share an exemplary for Huntington’s Disease commitment to bringing comprehensive care. HDSA Center of Excellence at University of Texas The strategic expansion of the Center of Excellence Health Science Center, Dr. Erin Furr-Stimming program allows HDSA to increase access to expert Melatonin for HD Gene Carriers with HD Related HD clinical care and clinical trial opportunities to Sleep Disturbance more families across the United States. With new Centers in California, Illinois, New York and HDSA Center of Excellence at the University North Dakota, HDSA now offers care locations of Virginia, Dr. Madaline Harrison in 31 states plus the District Training in Primary Palliative Care for Huntington’s Disease of Columbia. This year, HDCARE Clinic, Gottschalk Medical Plaza, UBMD Neurology, “Our HDSA Centers of Excellence are at the HDSA awarded a total of University of California, Irvine University of Buffalo (New York) epicenter in the search for better HD care and $1,418,684 to the Centers treatments. HDSA is pleased to support these pilot of Excellence program, “HDSA is deeply committed to helping families team approach to Huntington’s disease care and programs in the confidence that our investment an almost eleven percent affected by Huntington’s disease have access to research. Patients benefit from expert neurologists, today will provide a brighter future for all HD increase in funding from experienced and family-focused care,” said Louise psychiatrists, social workers, therapists, counselors families.” said Louise Vetter, HDSA’s President last year. Vetter, HDSA’s President & Chief Executive Officer. and other professionals who have extensive expe- and Chief Executive Officer. “The recognition of new Centers of Excellence means rience working with families affected by HD and that more families will benefit from comprehensive who work collaboratively to help families plan the care and the life-changing treatment and research best HD care program throughout the course of the opportunities that drive us forward towards finding disease. Applications to become an HDSA Center of a cure for this disease.” Excellence are open to all clinics in the United States who share HDSA’s commitment to high-quality, The HDSA Centers of Excellence provide an expert comprehensive care and access to clinical research. 2 3 7 8 6 THE STARS SHINE AT FREEZE HD GALA MORE THAN On Saturday, September 28th, four hundred guests $10,000 to support this wonderful night! gaming equipment and so much more! Freeze HD Special Thanks To Our th attended the 5 Annual Freeze HD at Avalon “The 5th Annual Freeze HD was the largest was supported by a wonderful event committee $420,000 Freeze HD Gala Sponsors Hollywood where more than $420,000 was raised that included Rachel McAdams, Jason Ritter, fundraising event ever hosted to support our 9 10 to support HDSA’s fight against Huntington’s Jaime King, Marianna Palka, Simon Helberg, Bryce WAS RAISED organization and we couldn’t have done it without GOLD SPONSORS disease. This star-studded event was hosted by Dallas Howard, Kenneth and Diane Mayfield, TH our incredible honorees, Scott and Kelsey Porter, AT THE 5 • Genentech actor Lamorne Morris and honored Kelsey and Blake and Jenne Coler-Dark, Brian Logan Dales, sponsors, event committee and everyone who • The Ferrell-Paulin Scott Porter. Some notable guests included Seth Matt and Courtney Hamilton, Jamie Linden, Justin attended as well as bid on the amazing auction ANNUAL Family Foundation Green, Topher Grace, Jason Ritter, Katherine items,” said Louise Vetter, HDSA’s President and and Kate Miner, Elliott and Tracy Owen, Carly McNamara, Marianna Palka, Kate Miner, Rachel Ritter, Nancy Morgan Ritter, Tyler and Lelia Ritter, FREEZE HD 14 Chief Executive Officer. “Thank you everyone — SILVER SPONSORS Bilson, Wilson Bethel, Jaime King and Jason Ziven, Angelique Cabral, Jaylen Moore and this was truly a showcase of the extraordinary GALA 15 • Bel Air Internet Allie LaForce. The event featured incredible live Britt Logan, Gentille Koosed, Kyle Newman, Adam 13 strength of the HD community.” • Cambium Networks performances from Brian Logan Dales and The Seid, Jessica Cain, Emily and Jamie Rodgers and • Keyes Real Estate Dales Hotel, Tyson Ritter from The All-American The incredible auction included exciting trips, Alana Yankowitz. 11 • Marron Foods Rejects, DJ Skee, DJ Prophet, Emma Hutton, Leslie signed TV/movie & sports memorabilia, 12 • Wave Life Sciences Powell and Scott Porter.