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 20FDA HEARING More than 250 family members affected by Huntington’s disease from across the United States joined HDSA at the U.S. Food and Drug Administration’s (FDA) Public Meeting on Huntington’s Disease Patient- Focused Drug Development. The hearing, which was advocated for by HDSA, was a one-of-a- kind opportunity for families to directly educate officials about the devastating impact of HD. Our thanks to the 3,600 family members who contributed valuable information about their experiences and symptoms through online surveys. Teva Pharmaceuticals provided a grant to help provide travel support for many families attending the hearing. HDSA HUMAN BIOLOGY PROJECT HDSA’s major research initiative, the Human Biology Project, entered its third year in 2015. The Human Biology Project was launched in 2013 as a critical piece of HDSA’s mission to support impactful HD research that will help guide us closer to effective therapies. The research we support is all patient centric and done in collaboration with HD clinics from around the globe with the goal of understanding HD in the only place it occurs, in humans. Thanks to the generosity of Mrs. Sandra Hurley of Arlington, TX, this year’s top scoring Human Biology Project proposal from Amber Southwell from the University of British Columbia was given the additional honor of being named winner of the Dr. Janis Brown Memorial Award. Sadly, Janis passed away in September 2014 after a long battle with HD. Mrs. Hurley — Janis’ cousin and caregiver — wanted to honor her legacy with this award and presented HDSA with a check for $174,000! INSIDE THE O’BRIENS New York Times bestselling author and neuroscien- tist Lisa Genova released her fourth novel, Inside the O’Briens which is about a family dealing with Huntington’s disease. Lisa’s previous book, Still Alice, was made into a major motion picture starring Julianne Moore, Alec Baldwin, Kristin Stewart and Kate Bosworth. Inside the O’Briens, published by Simon & Schuster, has received excellent reviews and has brought a great deal of awareness to the devastating impact that Huntington’s disease has on an individual and their family. The book also includes a call to action which has generated more than $30,000 to directly support HDSA’s Human Biology Project. 2 HDSA 2015 ANNUAL REPORT ADVOCACY REPORT 2015 was a record-breaking year for HD related legislation and HD Advocacy. We have continued to push for advancement in policy and legislation to improve the lives of HD families, as well as engage with federal agencies to educate them about the experiences of those affected by Huntington’s disease. HDSA’s National Youth Alliance kicked their advocacy efforts into high gear in 2015. More than 20 members of the NYA made their way to Washington, D.C. to complete three advocacy fly-ins, and take part in more than 300 meetings with Senators and Representatives about the HD Parity Act. While advocates were storming the Hill, hundreds of HD community members around the country sent in messages of support for the HD Parity Act and made their voices heard alongside the NYA. Without the bravery, passion and persistence of the HD community none of this would have been possible. THE LION’S MOUTH OPENS PREMIERES ON HBO During HD Awareness Month in May, critically-acclaimed filmmaker Lucy Walker’s The Lion’s Mouth Opens premiered on HBO and generated a great deal of awareness for HD. The powerful, Oscar-nominated, short film follows Marianna Palka as she courageously goes through the HD testing process with close friends by her side. 5 HDSA 2015 ANNUAL REPORT 4 HDSA 2015 ANNUAL REPORT 2015 Year in Review ANCHORS RAISE $10,000 ON CNN QUIZ SHOW On Labor Day, CNN anchors Alisyn Camerota and Chris Cuomo took the stage for “The CNN Quiz Show: TV Edition” hosted by Anderson Cooper. Despite a valiant third place finish, Alisyn and Chris brought in $10,000 for the charity of their choice — the Huntington’s Disease Society of America. Alisyn revealed on the show that her cousin’s family is affected by Huntington’s disease and HDSA is an organization very close to her heart. Alisyn also recorded a very informative PSA from the CNN “New Day” studio about HD, which can be viewed on the HDSA YouTube Channel. HDSA’S ONLINE PRESENCE REACHES NEW HEIGHTS In 2015, HDSA launched a new and improved and the HDSA Today e-newsletter. The new site is 100% mobile friendly and features “Locate Resources” with Google Maps, DonorDrive fundraising platform and the world’s most comprehensive Huntington’s disease video library on the HDSA YouTube channel. HDSA’s presence online and in social media positions the organization as the world’s online leader in Huntington’s disease education, research and awareness.