Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 202015 was an incredible year for the Huntington’s Disease Society of America as we reached new heights with the growth of our programs, the reach of our message, and therefore our ability to accomplish our mission — to improve the lives of people affected by HD and their families. The 2015 HDSA Centers of Excellence program represented a 45 percent increase from the twenty Centers awarded in 2014. The roster of Centers share an exemplary commitment to bringing more comprehensive care to more HD affected families across the United States, including a new ‘boots on the ground’ presence in at least ten states where the Center of Excellence program did not previously have reach. These include Delaware, Nebraska, North Carolina, North Dakota, Oregon, Pennsylvania, South Dakota, Tennessee, Vermont and West Virginia. In total, nearly $800,000 was funded to the HDSA Centers of Excellence program in 2015. The 30th Annual HDSA Convention in Dallas, Texas drew more than 800 guests attended the world’s largest Huntington’s disease convention which included world-class workshops and keynote speakers, a Team Hope walk, Texas Hold’em Tournament, and Celebration of Hope Gala. In attendance were people with HD, family members and caregivers, volunteers, as well as renowned clinicians and scientists in the HD field. HDSA’s TCS New York City Marathon team raised more than $125,000 to support HDSA’s mission to improve the lives of everyone affected by Hunting- ton’s disease. At the world’s largest marathon, HDSA finished in the top 18 among all charity partners. For a rare disease organization to finish in the top 18 of all the charity partners at the NYC Marathon is a true testament to the commitment the community has to helping families affected by Huntington’s disease and providing hope to one day end this horrible disease. We launched the new HD TrialFinder, a free, easy- to-use clinical trial matching service that connects individuals with Huntington’s disease, caregivers, healthy volunteers and physicians with current studies. The continuously updated database online at includes both interventional, observational and biomarker studies being conducted at clinical trial sites across North America. Currently, there are clinical research opportunities for every member of the Huntington’s community to join. From global initiatives to understand the disease to trials to evaluate the efficacy of specific treatments for HD symptoms, the field of HD science is providing an open door for families to help bring cures closer, and the HD TrialFinder is the point of access through which everyone can participate. Last year we were also thrilled to launch a new three-year grant for young scientists to work collaboratively with their mentors and other committed HD health professionals to help pursue innovative HD science and develop into the next generation’s HD science leader. The new Berman/Topper Family Huntington’s Disease Career Development Fellowship helps HDSA address the desperate need for career development mechanisms for young HD researchers whose resources have dwindled due to the stagnant budget at the National Institutes of Health, a traditional grant funder of new scientists. Dear Friends, Executive Leadership’s Message 2 HDSA 2015 ANNUAL REPORT HDSA is grateful for the partnership of the Berman and Topper Families who share our goal to ensure that the pipeline of passionate and bright HD scientists and clinicians remains full. Finally, our good work and high standards received recognition from Charity Navigator, the nation’s largest non-profit evaluator, with their coveted four-star rating. Imagine our pride when Michael Thatcher, Charity Navigator’s President and CEO, sent us a letter that began with the following: “ On behalf of Charity Navigator, I wish to congratulate Huntington’s Disease Society of America on achieving our coveted 4-star rating for sound fiscal management and commitment to accountability and transparency. Receiving four out of a possible four stars indicates that HDSA adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way. Approximately a quarter of the charities we evaluate have received our highest rating, indicating that Huntington’s Disease Society of America outper- forms most other charities in America.” It’s wonderful for HDSA to receive recognition from such a high-profile organization and it validates the hard work of the volunteers and staff that keep our organization vibrant and vital. But at HDSA our mission is our motivation. 3 HDSA 2015 ANNUAL REPORT We are driven by the families we serve and who depend on the help and hope made possible by power of our community and our commitment to a day with HD is no longer a burden. It’s that vision — a world free of HD — that pulls us forward into 2016 and all that we have yet to accomplish as we continue to lead the fight against Huntington’s disease. Thank you for being a part of our HD family, Jang-Ho Cha, M.D., Ph.D. Chairman, Board of Trustees Louise Vetter President & Chief Executive Officer