2016 Annual Report Huntington’s Disease Society of America “ From awareness and advocacy to community support and research, 2016 was an Support extraordinary year for the Huntington’s Disease HDSA Expands Centers NYA Keeps Growing! of Excellence Program HDSA’s National Youth Alliance In 2016, the HDSA Centers of (NYA) grew leaps and bounds! Society of America. We were Excellence program expanded For the first time ever, the to 39 Centers from 29 in 2015 NYA hosted multiple youth able to provide more assistance, — a 25% increase in the reach programming events around of the program. The HDSA HDSA Provides 1,000 the country. The NYA hosted Centers of Free Liftware Level Devices three NYA Regional Youth fund more science and ensure Excellence Retreats in 2016 in collaboration share an The Huntington’s Disease with local Chapters and more world-leading resources to families exemplary Society of America , in HDSA Centers of Excellence. commitment to bringing more partnership with Teva With funding from Teva affected by Huntington’s disease than ever before. comprehensive care to more Pharmaceuticals, launched a Pharmaceuticals, the National HD affected families across program that provides 1,000 Youth Alliance held free, day- the United States and will have free Liftware Level Starter Kits long retreats in Pittsburgh, This is all possible thanks to the tireless work more ‘boots on the ground’ with to HD families in need. Liftware Iowa City and Denver, bringing locations in 30 US states. HDSA Levels help people with limited 42 young people together to of HDSA volunteers and advocates across the allocated $1,092,250 to the hand and arm mobility hold a laugh, learn, and feel connected Centers of Excellence program utensil at the angle needed to to other young people affected which is a 38 percent increase eat more easily. by this terrible disease country. Thank you for all your dedication and in funding from the $790,000 support in the fight against HD!” awarded in 2015. 1 HDSA 2016 ANNUAL REPORT Education Research Awareness HDSA Research Grant Mouro Pinto of Massachusetts The Guthrie Sessions Programs General Hospital/Harvard at HDSA Medical School had been In November 2016, the This year HDSA launched The awarded the inaugural HDSA Huntington’s Disease Society Guthrie Sessions at HDSA to Berman-Topper Family of America announced that pay homage to our music roots HD Career Development nine research grants have been and the Guthrie family legacy. Fellowship. awarded under the Society’s The performances are edited largest research initiative, the This prestigious new and directed by Rae Maxwell HDSA Huntington’s Disease fellowship, made possible due and have received fabulous Human Biology Project. to generosity of the Berman fanfare. World Leader in Totaling $930,000, these and Topper families, provides HD Education grants represent HDSA’s up to $80,000 of funding per Presented by year for three years to young HDSA had a busy year developing patient-centric research focus scientists and clinicians who educational programs for which brings basic and clinical desire to make Huntington’s both our allied healthcare researchers together to facilitate disease (HD) part of their professionals and our HD Huntington’s disease science long-term career plan. families. For our healthcare in the human condition, Artists volunteer their time Dr. Pinto’s project is officially professionals, HDSA launched instead of in animal models, and talents to support HDSA’s titled “Identification of genetic a five part cooperative continuing with the direct participation mission and pay tribute to modifiers of somatic CAG education program with the of people affected by Woody Guthrie. Every Monday, instability in Huntington’s American Physical Therapy Huntington’s disease. a new song from a monthly disease by in-vivo CRISPR-cas9 Association/Neurology In May of 2016, HDSA featured artist is released on genome editing.” Division (APTA) in December announced that Dr. Ricardo #LetsTalkAboutHD the HDSA YouTube Channel 2015 to educate community and shared across HDSA’s based physical therapists. HDSA turned up the global volume on Huntington’s disease social media platforms. awareness by launching the incredibly successful #LetsTalkAboutHD The program has reached Additionally, HDSA launched a campaign during HD Awareness Month in May. The viral social thousands — introducing four part continuing education media initiative featured daily celebrity videos, family stories, HD to new audiences around course for community based photos and infographics discussing the devastating impact of the globe. Tune in at occupational therapists in Huntington’s disease. HDSA.org/GuthrieSessions. partnership with the American Celebrity support included: Mario Lopez, Scott Porter, Occupational Therapy Drew Brees, Joe Smith, the L.A. Angels, Vincent Piazza, Association (AOTA) in order Lisa Genova, Jake Dowell, Jerrod Niemann and many more! to educate community based occupational therapists on what they needed to know about HD in order to assess and treat persons with HD in their communities. Betty Who performing at the Guthrie Sessions at HDSA. 2 3 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT Events Advocacy 31st Annual Huntington’s Disease FDA Approves Drug Review HDSA Convention Parity Act for HD Treatment The Huntington’s Disease 2016 was a banner year for HDSA advocates came out in Society of America welcomed Advocacy! Advocates from all force to tell the Food and Drug nearly 930 guests to the corners of the HD community Administration that we need 31st Annual HDSA Convention got engaged in the effort to new treatments for HD. In just in Baltimore, Maryland. Held pass the Huntington’s Disease over one month, almost 4,000 at the Hyatt Parity Act and to see positive members of the HD Community Huntington’s Disease Regency Society of America changes for families affected signed their names and told THIRTY-FIRST Inner Harbor, ANNUAL by Huntington’s disease. We their stories in a petition asking the three- CONVENTION saw major victories in 2016, the FDA to allow SD-809 a day event JUNE 2-4, 2016 including the release and speedy and community-focused took place implementation of new review. As a result, the FDA has June 2nd guidelines for HD by the Social accepted a new review of the thru 4th and Security Administration (SSA). drug with priority status. was the second most attended Convention in the organization’s history. The vast majority of attendees were individuals from Huntington’s disease families, Team Hope Walk Program but they were joined by a global roster of researchers, social Thanks to the INCREDIBLE work of HDSA’s volunteer-led 54 Chapters workers, clinicians, volunteers and Affiliates across the country, HDSA’s signatureTeam Hope walk and advocates. program had a record year raising $2.3 million and registered 16,000 walkers in 2016! Second Annual Freeze HD Event The stars came out on September 24th, 2016 at the Bootleg Theater in Los Angeles to raise funds and awareness at the Second Annual Freeze HD event. More than $200,000 was raised to support HDSA and HDBuzz. Among the many special guests in attendance were actresses Annette Recognition Bening and Marianna Palka as well as Jason, Tyler, Carly and Nancy Ritter. Above: HDSA’s Chairman, Dr. Jang-Ho Cha and Chief The event was coordinated by actress Kate Miner and her family. Kate’s HDSA Receives Highest Ratings mother and two sisters have tested positive for HD and have become Executive Officer, Louise Vetter, incredible advocates in raising HD awareness and funds to support present Woody Guthrie In late 2016 it was announced “Thanks to the hard work and HDSA’s mission. The event also included special musical Advocacy Awards to members that the Huntington’s Disease vigilance of the HD Community performances from Moon Child and Zac Clark. of the HDSA National Youth Society of America once again we are honored to uphold Alliance Advocacy Board. achieved Top-Rating status these high standards,” said from CharityWatch and a Louise Vetter, HDSA President Four-Star rating from Charity & CEO. Navigator. 4 5 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT Statements of Financial Position Consolidated Statement of Activities AS OF DECEMBER 31, 2016 AND 2015 AS OF DECEMBER 31, 2016 AND 2015 2016 2015 2016 2015 ASSETS SUPPORT & REVENUE Cash and cash equivalents 5,682,692 4,537,268 Public donations 2,245,579 2,813,604 Investments, at fair value 496,158 425,792 Foundation grants and corporate contributions 1,749,617 1,946,618 Pledges and contributions receivable, net 905,233 1,115,008 Federal campaign 303,133 289,481 Prepaid expenses and deposits 146,030 144,645 Investment income 13,170 7,615 Property and equipment, net 50,747 45,608 Donated services and materials 301,028 539,033 Total Assets 7,280,860 6,268,321 Other 5,883 22,913 Total Support and Revenue 4,618,410 5,619,264 LIABILITIES Accounts payable and accrued expenses 120,396 220,345 EXPENSES Accrued compensation 257,019 249,235 Program services: Research grants payable 1,032,367 540,161 Research 1,959,619 1,727,027 Deferred rent 93,118 72,116 Family services 2,275,034 1,949,944 Obligation under capital lease 21,331 2,626 Education 1,540,144 1,553,769 Deferred revenue 31,254 34,010 Chapter development 1,004,040 1,014,896 Total Liabilities 1,555,485 1,118,493 6,778,837 6,245,636 Supporting services: NET ASSETS Management and general 1,060,855 913,562 Unrestricted Fundraising 1,095,412 1,148,113 Undesignated 1,047,304 204,517 2,156,267 2,061,675 Board-operating reserve 932,251 686,827 Total Expenses 8,935,104 8,307,311 1,979,555 891,344 Temporarily restricted 3,495,820 4,008,484 Change in net assets before non-operating income (4,316,694) (2,688,047) Permanently restricted 250,000 250,000 Non-operating income: Total Net Assets 5,725,375 5,149,828 Special events: Gross receipts 5,456,354 4,628,905 Total Liabilities And Net Assets 7,280,860 6,268,321 Less: direct costs (564,113) (598,394) Net income from special events 4,892,241 4,030,511 Increase in Net Assets 575,547 1,342,464 NOTE: These Consolidated Statements reflect HDSA’s Net assets - beginning of year 5,149,828 3,807,364 operations for the fiscal years as stated and include all affiliates.