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 , 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 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. Please contact the HDSA National Office for a full copy of the Net Assets - December 31 5,725,375 5,149,828 audited financial statements.

NOTE: These Consolidated Statements reflect HDSA’s operations for the fiscal years as stated and include all affiliates. Please contact the HDSA National Office for a full copy of the audited financial statements.

6 7 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT Your HDSA Dollars at Work HDSA Leadership

OVERVIEW

HDSA NATIONAL BOARD OF TRUSTEES SENIOR STAFF $10,074,764 TOTAL 2016 REVENUE Arik Johnson, Psy.D. Gerald Francese, Esq. Louise A. Vetter Chair New York, NY President and INCREASE IN NET ASSETS Los Angeles, CA Samuel Frank, M.D. Chief Executive Officer $575,547 Boston, MA EJ Garner George Yohrling, Ph.D. Chair Elect Michelle Gray, Ph.D. Senior Director FUNDED HDSA CENTERS Olympia, WA Birmingham, AL Mission & Scientific Affairs OF EXCELLENCE AND $2,329,769 RESEARCH PROGRAMS Daniel S. Vandivort Donald Higgins, M.D. Nadene Alleyne Treasurer Albany, NY Director of Financial & Riverside, CT Administrative Management FUNDS ALLOCATION Bill Kline Jennifer Leyton Eatonton, GA Christopher Cosentino Secretary Director of Marketing New York, NY Michael Roth & Communications New York, NY Jang-Ho Cha, M.D., Ph.D. Nancy A. Rhodes Past Chair Arvind Sreedharan Director of Field Development Cambridge, MA Chicago, IL & Operations

Dan Brennan Victor Sung, M.D. Berkeley Heights, NJ Birmingham, AL

Stacy Coen Cambridge, MA

Hugh de Loayza 76% 12% , CA PROGRAM SERVICES MANAGEMENT 12% 15% FUNDRAISING Chapter Development 33% Program Family Services Services 23% Funds Education 76% Allocation Huntington’s Disease 29% 76% OF ALL FUNDS Research ARE ALLOCATED TO PROGRAM SERVICES

8 9 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT Society of America Thank You! Thank You to Our Donors for Their Generous Support

Ms. Greta K. Abbott Mr. Robi Blumenstein Mr. & Mrs. James W. Christus Elizabeth Detor Mr. Jonathan Fragodt Mr. Richard Graham Mr. Jack Abraham Mr. Dane R. Boggs, Jr. Mr. Michael Cianciolo Mr. Jon Dickens Mr. Jon Fraleigh Ms. Jody Gray Ms. Claudia R. Adkison William Bolt Mr. Matthew Cichocki Ms. Gail Dinkin Mr. Gerald Francese, Esq. Michelle Gray, Ph.D. Mr. James Agnich Ms. Christina Borchers Ms. Karen Clark Joe & Kelly DiPucchio Dr. Samuel Frank Ms. Heather Grazzini-Sims Mr. Troy Aikman Mr. David Boren Ms. Linda Clark Ms. Abigail Disney Mr. & Mrs. Brian E. Frauenholtz Mr. Jerry Greenwald Caity Albert Jason Boston Mr. & Mrs. David Clarke, Jr. Mr. Harry Dittman Mr. & Mrs. David P. Friedman Amanda Greenway Ms. Lisa Altman Tyler Bowersock Mr. Michael Clausen Mr. & Mrs. Ned Doelling Mr. Gordon Friedman Paula Griffin Elias Amireh Ms. Carolyn Bowsher Mr. Randy Clemens Ms. Erin Dolinko Mr. Stephen C. Fugate Sandy & Paul Griffith Joanna Anderson Ms. Deb Boyd Mrs. Donna S. Cobb Ms. Marquerita Domanico Mr. Daniel Fuller Mr. & Mrs. Kurt R. Grigsby Ms. Karen Anderson Mr. James Boykin Ms. Elizabeth Cobos Mr. Francis Donoghue Dennis & Colleen Gaffney Ms. Jeanne Marie Gruhlke Ms. Peggy Anderson Robert & Shelia Brack Ms. Joan Cody Ms. Dawn Doster Tom Galbraith Mr. George E. Gudac Ms. Sonjia Anderson Bryne & Becky Brady Richard Collette Mr. Pete Douville Mr. & Mrs. Paul D. Galea Mr. Mark Gudac Mr. Paul Andriot John & Melinda Bray Mr. & Mrs. George and Maureen Collins Mark Dressler Mr. Brian Gallagher Mr. & Mrs. Peter Gyure Ms. Jamie Angotti Peter Briger Stuart Collins Elaine & Eugene Driker Ms. Carla Gannon Mr. Matt Habeger Frank Apeldoorn Mr. Terry Briscoe Ms. Karinne Collinsworth Ms. Sarah Duffy Ms. Karen Gannon William Hageman Mr. Samuel Assael Mr. Eric Brodwin Mr. & Ms. Francis Corcoran Mr. George L. Dukes III & Ms. Vicki Zeiba Ms. Evelynn Garcia Mr. & Mrs. Brock R. Hajdik Mr. Michael Ayers Ms. Mildred Brogan Mrs. Robin Costantino Mr. & Mrs Roy T. Duvall Tammy Gard Ms. Nancy Hale Mr. Phil Bachler Cheryl Bronkema Ms. Pat Costello Diane Earl McCan Ms. EJ Garner Mr. Travis J. Hall Ms. Hedi Bacon Ms. Sandra Brooks Larry Cottingham Ms. Jackie Edwards Ms. Andrea Garrett Julia Halsey Vincent & Phyllis Bacon Mr. & Mrs. Bill Brown Ms. Linda Coulehan Mr. Martin Eglitis Mr. Mike Gary Mr. Robert Hamel Mrs. Koaki Bailey Harris Mr. Christopher D. Brown Mr. Mike Courson Mr. & Mrs. Henry Ehrsam Ms. Alexandra Gass Mr. Max Hamilton Ms. Carol Baird Mr. & Mrs. Jason Budzinski Ms. Theresa Couture Mr. Thomas Ehrsam Mr. & Mrs. Michael Gaston Ms. Rosalie Hamilton Mr. Mark Baker Mr. Scott R. Bundle Lynne Coviello Ms. Helene Eisenbraun Ms. Raquel Gaytan Mr. & Mrs. Scott & Janet Hamilton Mr. Norm Baldwin Mr. & Mrs. Michael A. Busken Janice Cox Ms. Carmen Eland Andy & Jill Gehl Ms. Rosemary Hampton Mr. & Mrs. Norm Baldwin Mr. & Mrs. Robert Byrd Mr. & Mrs. Michael L. Cozine Mr. & Mrs. Robert Eland Mr. & Mrs. Mark & Marisol Gerson Mike & Jackie Hancock Ms. Kristi Ballou Ms. Carrie Campbell Ms. Jenny Craig Ms. Susan Elsasser Deborah Gex Ms. Vickie Hannig Norman & Carole Barham Ms. Julie Campbell Mr. & Mrs. Scott Cranford Mr. Arne Ericson Mr. William Gibbons, DBA Carol Harbour Mr. Larry Barnhart Mr. Edmund P. Cancelmo, Jr. Mr. Steven Cronkhite Wendy Erler Mr. Ronit Gilad Mr. Harold Harden Mr. Donald L. Barr Ms. Kinser Cancelmo Mr. & Mrs. Keith Crowther Justin Esayian Yehoshua Gilad Ms. Paula Harshaw Donald Barrett Mr. Matthew Carcich Ms. Therese Crutcher-Marin Ben Esser Mr. Todd & Debra Gillis Mr. Tony Hartling Anna Bartley Ms. Marci Carpenter Mr. Thomas A. Cuomo Shabtai & Eileen Evan Ms. Judith Giordano Ms. Kimberly Hartz Foster Mr. Philip Bartley & Ms. Heather Morrison Mr. Felix Carranza Michael & Christine Curry Sherry Farid Ms. Daneen Gittings Mr. & Mrs. Carter Hastings Ms. Lisa Basile Michael Carroll Ms. Theresa Cutler Ms. Sandee Farley Mr. Marc Glassman Mr. & Mrs. Daniel Hathaway Mr. & Mrs. Donald Becker Mr. Ronald Carroll Mr. & Mrs. Brent Dafforn Steven Fay Mr. Mike Glickenhaus Ms. Catherine Hayes & Mr. Mark Wiesel Ms. Gina Becker Ms. Ann Carter Mr. & Mrs. William P. Dake Mr. & Mrs. Robert Fazio Mr. & Mrs. Bruce Godfrey Ms. Pamela Hayes Ms. Sandra Becker Ms. Diane Cascone Mr. Sterling Dalatri Ms. Amy Fedele Ronald Goglia Mr. William N. Hayes Dr. Ashok Behl M.D., FACC Mr. Enrico Cascone Ms. Jamie Dalessandro Jonathan Ficcadenti Ms. Deanna Goldberg Mrs. Janice Hayes-Cha Ms. Katherine P.Benson Ms. Lavonne Cashman Mr. John Dalton Mr. Jeff Fini Harvey Goldberg Vicky & Lynn Hediger The Benzaken-Koosed Family Trust Mr. Bob Cassity Thomas Daniel & Susan Brooks Mark Finley Jennifer Goldman Mr. Michael Hedrick Ms. Dori Bergman Ms. Jennifer Causey Mr. Matthew Davis Mr. Larry Fisher Ms. Nancy Goldring Dr. Barbara Heere David & Linda Bergstrom Ms. Eleanor Cerone Ms. Christy Dearien Timothy Fisher Kristine Gonet Mr. & Mrs. Daniel Hellriegel Mr. & Mrs. Steve Bergstrom Dr. Jang-Ho Cha, M.D., Ph.D. Mr. Arthur Decker Ms. Leslie Fisk Mr. James Goodchild Tina & Cody Hellum Mr. Michael Berman Ms. Joy B. Chadwick Mr. & Mrs. Fred W. Dehnke Mr. & Mrs. Scott A. Fitcher Mr. Roger Goodell Mr. John Henderson Bernice and David Gotlieb Philanthropic Fund Dr. David J. Chao Mr. & Mrs. Mario A. DeJulio Robin Flanagan Mr. Nathan Goodman Ms. Andrea Henry Hemangi Bhalsod Susan Charters Mr. & Mrs. Leonardo G. Del Castillo Mr. & Mrs. Daniel Flesch Ms. Claudia Gordon Mr. Darrin Henry Mr. Michael Bittrick Ms. Latrice Chatman Mr. Hugh de Loayza Mr. & Mrs. Tim and Amy Foley John Gordon Ms. Susan Hermann Ms. Annetta Black Ms. Mary Cheng Ms. Winifred de Loayza Ms. Laura Ford Mr. Henry Grabowski Ms. Marilyn Heron Mr. Jeffrey Blakeman Mr. Anthony Chimino Ms. Lyn Denend Mr. Wesley Foster Ms. Susan Grace Dr. Donald Higgins, Jr., M.D. Don Blanton Bradley Christus Mr. Dan DeRyke Debbie Fox Father Joe Graffis Ms. Cindy Hillyer

10 11 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT Mr. Jack Hilty Ms. Candace Kebert Jennifer & Mark Leyton Ms. Tracy Mezzalingua Mr. Mark Olson Ms. Helen F. Reed Mr. William Hinde Ms. Dorothy Keine Mrs. Evelyn Lieberman Wes Michael Wendy & Allan Ostrem Ms. Beth Resch Ms. Jaclyn Hindel Irwin & Betty Keller Mr. & Mrs. Ryan Lee Lifer Rosemary Micu Philip J. Ouellette Mr. & Mrs. Carl Rhodes Mr. Adam Hinrichs Dr. & Mrs. Roger Keller Mr. James Lightly Mr. & Mrs. Anthony Miller Ms. Annetta Owens Ms. Leslie Rich Mr. & Mrs. Michael Hipp Ms. Winifred O. Kelley Mr. & Mrs. Phillip & Eva Lindsey Mr. James Miller Mr. Robert Pacifici Francis A. Rickert Ms. Marilyn Hixson Mr. Daniel Kellner Mr. Jeffrey Lipsitz Ms. Jane Miller Ms. Christie Palmer Mr. & Mrs. Guy & Cindy Riddle Mr. & Mrs. David Hodgson Mr. Mark Kellner Mr. Donald A. Lorack Mr. Jonathan Stephen Miller Dr. William Parker Ann & Steven Ridenhour Dr. Daryl K. Hoffman, M.D. Mr. & Mrs. Randall F. Keogh Ms. Susan Lord Ms. Linda Miller Ms. Julia Pastirik Mr. & Mrs. Paul R. Riewe Brian & Deborah Holloway Shannon Kerns Ms. Eileen T. Lorimer Mr. Mike Miller Ms. Karen Paterson Mr. Jay Riffkin Mr. & Mrs. David P. Holloway Ms. Erlene Ketchum Ms. Nancy Lucchese Mr. & Mrs. Bruce Miller Ms. Laura Paul Charles Rinaldi Mr. Thomas Henry Holman Bryan Kett Ms. Annette Luckow Ms. Peggy A. Miller Ms. Diane Paxhia Mr. Jason Ritter William & Leslie Holmes Ms. Carol Kilduff Ms. Lynne Lupton Mr. Renick Miller Brett Paxton Rock Springs Elementary PTA Mr. Charles R. Horan Ms. Viki Kimsal Ms. Betsy Lussier Mr. Robert Millum Matthew Pearson Mr. Christian Rodriguez Wendell Hoskins Ms. Jean D. Kinda Mr. & Mrs. Gary J. Lynah Mr. Michael Mimeles Tarang Pene Mr. & Mrs. Edward Roffman Mr Robert Howard Michael King Ms. Linda MacDonald Mr. John Mirabito Mr. James Perhus Ms. Andrea Rogozinski Mr. Bob Howells Stephen King Ms. Cara Magliaro Ms. Hannah Monteiro Mr. Charles Perrell & Dr. Elizabeth Guillaumin Jeannine Roland Ms. Hilary Hubbard King Philip Regional School District Mr. Steven Manson Mr. Casey Montgomery Ms. Annie Peterson Ms. Roz Romney Mr. Michael Hubbard Mr. Joel Kingery Mr. Ernest Mansour Shawn Moore Ms. Deb Peterson Mr. & Mrs. Reed Rosling Mr. Andrew Hucker Mr. Michael Kinkelaar Bill Marnell, Pittsburgh Highlanders RFC Mr. Michael Moran Mr. Eric Peterson Mr. Ted Ross Ms. Patricia Huffman Patrice & Donald Kirshbaum Mr. & Mrs. Kevin Marsh Mr. & Mrs. Tom Morelock Ms. Alicia Phelan Louis & Kathi Rotella Mrs. JoAnn L. Hughes Mr. & Mrs. William Kline Ms. Judith Marshall Ms. Ann Morrical Ms. Elizabeth Phillips Ms. Joyce Rothe Mrs. Sheila Hutcherson Mr. & Mrs Jeffrey M. Knass Mr. Dennis Martin Lindsay Morrison Mr. Chris Polizois Mr. Damon Roush Carole Iammarino Ms. Linda Knoll Mr. Gregory Martin Walt Moscoso Ms. Marilyn Polk Mr. & Mrs. Joel Rubinson Mr. Sammy Jackson Ms. Sarah Knowles James Martin Michael Moses Mr. Jeffrey Pollack Ms. Kathleen Ruen Ms. Jennifer Jeffries Mr. & Mrs. Paul Knutson Mr. & Mrs. Roger Martin Ms. Sharmin Mossavar-Rahmani John Pomerville Mr. John Russo Ms. Arlene Jennings Ms. Sherri Kole Mr. Petronilo Martinez Soriaya Motivala Mrs. Angela Ponatoski Josh Ruston Mr. William Jennings Gentille Koosed Ms. Gertrude H. Marvin Linda Mulhall Ms. Teri Popp Tony Sabo Mr. Brad Johanson Jane Korn Ms. Susan Matthews Ms. Debbie Mulligan Ms. Irma C. Poretsky Mr. Ajay Saini Mr. Arik Johnson, PsyD Ms. Clare Kosbab Ms. Nicole Mawby Mr. Mark Murphy Ms. Jennifer Pratt Mr. Michael Salazar Mr. & Mrs. Eric & Peggy Johnson Ms. Sandra Kostyk Mr. John Maxwell Ms. Mary Jo Murphy Steve & Sharon Primeau Robert Samuels Mr. Jim C. Johnson Philip Krebs Ms. Dorla Mayer M.G. Murray John Pritchard Mrs. Rachel Sanborn Ms. Susan Johnson Ms. Bette Kreisa-Kluge John McCaffery Ms. Joyce Mutcher Mr. & Mrs. Brian Pyle Mr. Sandy Sanford Mr. Bill Johnston Ms. Karina Krepp Mr. John McCaffrey Ms. Cheryl Myers Ms. Pamela J. Pyle Mr. Miguel Santana Stephen Johnston Ms. Stephanie Krieger Mr. & Mrs. Martin McCarthy Ms. Mary Nada Queen Anne’s County High School Mr. & Mrs. James Sault Mr. Steve Johnston Mr. Edward Krisch Mr. & Mrs. David K. McClure Dr. Martha Nance, M.D. Ms. Kristen Quinlan Mr. Jerome Saunders & Ms. Elaine Appellof Brian Jones Ms. Carole W. Lacock Mr. & Mrs. Michael McCoy Michael Napoli Mr. Michael S. Quinn Mr. Jeff Savage Mr. Christopher A. Jones Dr. & Mrs. Barry Landau Mr. Chad McDonnell Mr. Michael Neil & Ms. Krista A. Landerholm Ms. Caryn Scarcella Frank Jones Mr. Wayne Langen & Ms. Kathryn Rynning Ms. Kristin McDonnell Mr. Brian Nelson Ms. Joyce Quisenberry Mr. William Scheel Mr. Keith Jones Ms. Daniele Laub Anne McGlamry Joe & Pam Nemec Mr. & Mrs. Michael Rahill Dr. Eric P. Schneider Ms. Lauren Jones-LeRoy Mr. Ted Lawshe Sarah Barfoot & Jack McGrory Family Ms. Nancy Newbold Jay Rains Mrs. Marianne R. Schneider Ms. Marcella J. Junco Mr. Kevin Le Compte Ms. Renee McGuire Mrs. Ethelyn Newton Ms. Heidi Ramos Ms. Phyllis Schnitman Larry & Dianne Jurica Mr. William Leavy Mr. & Mrs. Scott F. McLane Francis Nolan Mr. Robert Ramos Ms. Gretchen Schroeder Mr. & Mrs. Lawrence Justin Ms. Sandra Lechner Ms. Kim McNair Ms. Amy Nowka Mr. Arthur Rangel Ms. Donna Schu Mr. Steven Kaplan Mr. Robert Lees Mr. George B. McPherson Mr. John R. Oakland Cheryl Rantala Mr. & Mrs. James Schuler Ms. Pamela & Vijay Kapoor Ms. Carolyn Leetch Mr. & Mrs. Kenneth McVay Mr. Jason Oberman Ms. Marie Raspanti Mr. Michael Schuler Ms. Sanjay Kapoor Nick Lenertz Ms. Pamela Meacham Robert O’Brien Ms. Laurayne Ratner Ms. Jill Schultz Dr. Richard R. Karlen Mr. George Letchworth Arnold & Harriet Meier Ms. Helen O’Connor Mr. Stephen M. Rattner Mr. & Mrs. Joseph C. Schwanebeck Mr. Peter Karpovich Mr. & Mrs. Daniel R. Leugers Raymond Melleady Ms. Joan M. O’Donnell-Starcevich Mr. Andrew Rayburn Gerald Schwartz Mr. & Mrs. Robert Karrow Mr. Craig Lewis Dan & Kathleen Mezzalingua Jane Okpala Mr. Clark Readler Mr. Gene Schwarzrock

12 13 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT Thank You! Thank You to the Following Corporations and Foundations for Their Generous Support

Ms. Keli Scott The Strick Family Mr. Anthony Visconsi $50,000+ $9,999 - $5,000 $4,999 - $1,000 Ms. Paula Scranton Ms. Kelly Strong Mr. Dominic Visconsi, Jr. Charles Schwab Foundation B&I Management Division A.T.A.P. COMPANIES Mr. & Mrs. Richard Seligman Ms. Julie Struble Mr. Dominic Visconsi, Sr. Community Health Charities BlueCross BlueShield of Tennessee Alberici Constructors Daniel Seligmann Robert & Rose Stubbs Mr. Dave Vogel The Gies Foundation Broda Enterprises Incorporated The Albertsons Companies Foundation Ms. Kim Sellers Deborah Suchman Mr. Robert Volpentest The Griffin Foundation, Inc. Charles River Laboratories The Allergan Foundation Mr. & Mrs. Kenneth Serbin Mr. William Summers, Jr. Ms. Marilyn Walker Kohl’s CHDI Foundation, Inc. The Allstate Foundation Mr. Robert Serpentini, Jr. Mr. & Mrs. Gregory J. Sunderhaus Mr. David Waltermire TEVA Pharmaceuticals Class Farms, Inc. Ally Financial Inc. Mr. Roger Sheeks Drs. Edwin & Dorothy Sved Dustin Walters Walmart Cleveland Clinic Amazon Smile Foundation Ms. Peggy Sheets Kay & Jim Swift Ms. Maggie Walters William & Margaret Fern Holmes Foundation CMS Mechanical Services, Inc. American Investment Co. Mr. Faryar Shirzad Mr. Jon Taffer Mr. William Walters The Columbus Foundation American Legion Auxiliary Mr. Jason Shultz Ms. Mary Ann Tally Ms. Karen Lee Wang $49,999 - $25,000 Employees Community Fund of Boein APC Workforce Solutions II, LLC Richard Shute Ms. Rochelle Tamkin Ms. Jane Ware American Legion Child Welfare Foundation Enterprise Holdings Foundation Apex Rehab Care Center Ms. Lisa Sidel John Tate Ms. Kelly Watson The Benevity Community Fund Fedeli Family Charitable Foundation Arbor Pharmaceuticals, LLC James Siegfried Ms. Danette Taunton-Patisaul Mr. & Mrs. John Weaver Lundbeck Inc. Ferncliff Nursing Home Company, Inc. ArcelorMittal Matching Gifts Program Mr. Robert Silliman Ms. Pyeatt Taylor Mr. Robert Weber MassMutual Fox Sports Media Group Argus Corporation Stephen Silver Ms. Mallory Clark Temple Ms. Sarah Weber Walter J. & Betty C. Zable Foundation FusionStorm Arkansas Blue Cross Blue Shield Allan Simon Jennifer Thiffault Mr. Walter Weber Wall and Ceilling Contractors Gamma Phi Beta Foundation Arm Group Inc. Jane & John Sira George Thomas Jacque Weeks Association, Inc. Give With Liberty The Ashton Company, Inc. Mr. & Mrs. James Skewes Mr. Eric Thompson Mr. & Mrs. Michael Weill Guggenheim Capital, LLC B & D Thread Rolling, Inc. Mr. AJ Smith Rhona Thompson Larry Weinstein $24,999 - $10,000 Guthrie Foundation The Bank of America Charitable Foundation Jayson Smith Mr. Dean W. Throckmorton Jay Wessels A.A. Will Corporation Ionis Pharmaceuticals, Inc. Bank of America Employee Giving Campaign Ms. Linda Smith Mr. Patrick Timberlake Ms. Beth Wheeler Borkee Hagley Foundation Fund Kaiser Permanente Berkshire Hathaway HomeServices Ms. Shona Smith Mr. George Timmons Dr. Vicki Wheelock Charitable Adult Rides & Services, Inc. Kosair Charities Committee, Inc. Bill & Melinda Gates Foundation Ms. Tiffany Smith Mr. & Mrs. Robert Tolve Ms. Georgeanna White Charles Schwab Leisure Chateau Rehabilitation, LLC Board of Education, School District No. 1 J.A. Smith-Young Ms. Aylice Toohey & Mr. Eric J. Gorman Ms. Karen R. White ConocoPhillips Company Leisure Craft Inc. The Boeing Company Mr. John P. Smyth Mr. & Mrs. Paul Torminio Mr. Stephen White Cymer, Inc Mack Cycle & Fitness Breckenridge Community Schools Mr. & Mrs. Michael R. Soland Mr. David Tovar Ms. Melissa Whitenight Fred Brotherton Charitable Foundation Martha Washington Straus-Harry H. Straus Bright Funds Foundation Mr. John Sollazzo Mr. Richard F. Travis John & Shelley Wierick Goldman, Sachs & Co. Foundation Buffalo Bills, LLC Dr. David Somerville, D.D.S. Tucker Triolo Mr. Paul Wiley Matching Gift Program Merck Foundation C.C. Hodgson Architectural Group Ms. Lauren Sondel The Trustees of Funds of Bethesda Mr. Richard Williams Haag Family Foundation Morgan Stanley C.H. Evans Brewing Co. Inc. Ms. Maggie Spaulding Lyle Tullis Mr. Robert Williamson Kindred Healthcare Operating, Inc. Oak Harbor Freight Lines, Inc. Care Realty Ms. Mary Speiser Kendrick Tupa Bonnie Wilson Liquid Investments Inc O’Brien Construction, Inc. Carefoam Chairs Mr. Tree Spell Mr. Rudolph E. Turco Allison Wimer Lockton People’s United Bank Case Western Reserve University Ms. Diana Spieker Dr. & Mrs. Thomas M. Turek, M.D. Ms. Mary Wisco Madison National Life Insurance Co Pfizer, Inc. Central Indiana Community Foundation Ms. Nancy Spiller Mr. Matthew Turner Ms. Pearl Wobbema Marcum Search LLC Raymond Jones and Associates, Inc Certified Blue Plumbing, LLC Mr. & Mrs. Craig T. Srajer Tanya Tyburski Mr. Scott Wolstein MFS Investment Management & Subsidiaries Roche Chargers Charities Mr. Arvind Sreedharan Mr. Eric Ullerich Ms. Becky Wood National Insurance Services Sanofi-Aventis Charles T. Sitrin Health Care Center, Inc. Mr. Joshua Sroge Mr. Charles Underwood Mr. Josh Wood PGA TOUR, Inc. Shell Oil Company Christ Church Pompton Lakes, NJ St. Andrew’s School Ms. Nancy Urbach Mr. Jeffrey Woodson Philanthropic Ventures Foundation SWS Charitable Foundation, Inc. Christ Church Thrift Shoppe Ms. Ruth Stanton Mr. Rick Urban Mr. John Wotkun The Ralph C. Wilson Jr. Foundation Taft Stettinius & Hollister LLP City of Dillon, South Carolina Mr. & Mrs. Douglass Steiger Mr. Brian Van Haren Ms. Cora Dee Wright Rockford IceHogs United Way of Central Jersey, Inc. Clocktower Entertainment, LLC Ms. David Stein Mr. Daniel Vandivort & Ms. Marie Pipitone Mr. & Mrs. Clark S. Wrigley Third Federal Foundation Vaccinex, Inc. CN Corporate Services Roy Stephenson Frank Vanskike Mr. Nicholas Wunder Union Bank Community Support Campaign CNA Foundation Mr. Ross Sterling Mr. & Mrs. James Vaughan Dale Yahnke United Life Insurance Company Coach Mr. Benjamin Stern Lisa Vaughan Rachel Yeats YourCause, LLC CoBank Jeanne Stewart Mr. & Mrs. Roger Vaughan, Jr. Ms. Elaine Yohrling Mr. Roger Stewart Mr. Steven Vaughan Drs. George & Jennifer Yohrling Mr. Brian Stiff Mr. Steven Vaughn Mr. Jeff Young Gina Stiffler Ms. Shana Verstegen Mr. John Zercher Mr. & Mrs. Mark Stigge Mr. Anthoni Visconsi II Catherine Ziemann

14 15 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT The Columbia Foundation Fonville Morisey KG Development Corporation Northrop Grumman Corporation Rotary Club Studio City-Sherman Oaks U.S. Cellular Columbus Sharks Masters Swim Team Fraternal Order Of Orioles Kingston Veterans Club Northwest Charitable Foundation Inc. Royal Credit Union UBS Columns Resource Group Foundation Frederick Wildman & Sons Ltd. KPMG, LLC Novacorr Healthcare S&T Bank Uniqure Biopharma Primary The Friedheim Foundation Kroger Novus International Samaritan Hospital Foundation United Bank VA Commercial Development Company Gang, Tyre, Ramer & Brown Charity Fund Kupper The Nuture Foundation Half Marathon United Door, LLC Competitor Group Inc Gap Inc. Label Print America OC Concrete, LLC Sanford Health United Way Courtyard By Marriott Downtown Gary C. Leonard D.D.S. Lady Vikings Soccer Ochsner Clinic Foundation Schellinger Construction Co., Inc. United Way - Valley of the Sun Coverys Community HealthCare Foundation The GE Foundation Lake Erie College of Osteopathic Medicine OPICI Family Distributing/Wine Co. of NY Schwab Charitable Fund United Way of Buffalo & Erie County Cranney Companies GE United Way Campaign Lake Park High School District 108 Optimist Club of Country Schweitzer Engineering Laboratories, Inc. United Way of Greater Milwaukee Cresa Partners Boston, Inc. Gerstle, Rosen & Goldenberg, P.A. Land Rover San Diego Oracle Charity Account Segfried, Rivera, Hyman, Lerner, De L Torre, United Way of Greater Philadelphia & SNJ The Dallas Foundation Goins Enterprises, Inc. Leathernecks Tattoo Pacific Service Credit Union Mars & Sobel, P.A. United Way of Greater Rochester Dappered LLC Good Samaritan Society Libertyville Chevrolet Parkway Electric & Communication, LLC Shelter Insurance Federal Credit Union United Way of Metropolitan Chicago Day Air Credit Union Greater Kansas City Community Foundation Libshap Realty Corporation Perrigo Company Foundation Shmerler Foundation Inc. United Way of The Greater Capital Region, Inc. Delta Dental of Kentucky Greenstreet, Inc. The Little Bar Pershing Showplace Wood Products Inc. University of California Deutsche Bank Americas Foundation Ground Engineering Consultants Lloyd Property Management Pfizer Foundation Matching Gifts Program Silicon Valley Community Foundation University of Iowa - Kids HD Study DFS, Inc. Gulf Coast Educators Local Union 253 of UBC & JA Phillips E Patton Charitable Foundation Falls Referral Network Vanguard Charitable Dick’s Sporting Goods, Inc. Guy Yocom Construction, Inc. M. A. Mortenson Company Pickford Realty Cares Smithco Inc. VCU Health System Dignity Health H & L Care Centers, Inc. M.S Walker The PIMCO Foundation Spectex, LLC. Vertex Pharmaceuticals Directv, LLC Harbor Station Communties LLC Macy’s/Bloomingdale’s Pinedale Mudd Volleyball Spectra Energy Foundation Vertical Bridge REIT, LLC Discount Liquorland Inc. Healthcare Association of NY State Madison Log Rolling LLP Pitney Bowes Spring Lakes Estates Victor and Carol Dorn Family Fund DLA Piper LLP Hill Group, LLC Manson Engineering Construction PJM Interconnection Stadheim Foundation Vienna Beef Dollar Bank Foundation Hope Conquering Huntingtons, Inc. Mantoria Inc. Play Hard Event Timing, LLC Stanford HealthCare Village Green Related Companies, LLC Don Wilhelm, Inc. Houston Volleyball Association, Inc. Margaritas Management Group, Inc. Pleasant Valley Baptist Church Stearns Weaver Miller Weissler VitaCare Medical Products Douglas Polaner Selections, LLC. HSBC McInnes Group, Inc. Plumbing Mechanical Contractors, Inc. Alhadeff & Sitterson, P.A. Voyager Therapeutics, Inc. Dow-Rummel Village The Huntington National Bank The Meyer Charitable Foundation PNC Financial Services Group Stewardship Financial Advisors Wallcovering Designs, Inc. Eagle Creek Foundation Hy-Vee, Inc. Michael & Susan Dell Foundation Praxis Engineering Stratos Wealth Partners Ltd Washington University in St. Louis Editas Medicine, Inc. IBM Employee Services Center Michael Skurnik Wines, Inc. Prestige Employee Adminstrator, Inc. Summerfield Health WAVE Life Sciences Empire Merchants North, LLC. iHeartMedia San Diego Midtown Home Improvements, Inc. PrimeLending, A PlainsCapital Company The Sundt Foundation Wawa Employees Charity Organization of Inforeliance Corp. Midwest Family Lending Pure Soil Technologies Inc. Superior Felt & Filtration, LLC Westlake Acres Nursing Northrop Grumman Innerspace Custom Interiors, LLC Millennium Reinforcing, Inc. Pyke & Associates PC Tegeler & Associates and Rehabilitation Center, LLC ENR - Contracting, LLC IRBM Science Park Mohawk Industries, Inc. R.C. Baker Foundation Ten Times Cellars Westmont Associates Environmental Waste Minimization, Inc. The Ironman Foundation, Inc. Monsieur Touton Selection Ltd Radley Automotive Group Terracast Products, LLC Whelen Engineering Company, Inc. Estate and Tax Planning JFK Hartwyck National Charity League Rain-A-Way Exteriors, Inc. Terrence Cardinal Cooke Whiteman Osterman & Hanna LLP Eversource Energy John Deere Foundation NBC Universal Rare Patient Voice Thomson Reuters Winebow, Inc. Evotec AG Johnson & Johnson Nestle Waters, NA Redstone Federal Credit Union Three Rivers lacrosse The Wireless Zone Foundation for Giving, Inc. Exelon Foundation JV Ventures, Inc. Network For Good Regeneron Pharmaceuticals, Inc. Toyota of Lawton Wolf Investors, LLC Fermol Inc Kaiser Foundation Health Plan of the New Day Community Church Residence Inn Denver Transformations, Inc. World Musky Hunt, Inc. Fine Estates from Spain, Inc. Northwest Community Giving Campaign Newman Signs, Inc. RGPJ Memorial Golf Outing Tri City Rentals Zippyreg.com First Premier Bank Kelley Kronenberg, P.A. North Hills Sports Car Club Ristorante Giovanni’s Trinity Health Focus Brands Inc. Kenny’s Tattoo Studio LLC Northern Trust Charitable Giving Rohrbach Family Foundation Truist

16 17 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT Planned Giving Special Thanks

As promising clinical trials move us closer Planned Giving is the fact that the We are grateful for the gifts from the following estates to potentially game-changing cures and proceeds from an estate or asset can treatments, HD families across the country sometimes allow individuals to actually who helped make our work possible in 2016. still require access to the crucial research, contribute more toward programs than care, and advocacy programs that HDSA they might be able to give in their lifetime. provides. With the help of a financial planner, Planned Giving donors can arrange their Our Planned Giving program ensures gift in a way that ensures that, after taxes, Estate of Barbara L. Bell that HDSA has the resources to continue the largest possible sum can have the providing help and hope to the HD strongest possible impact on the lives Estate of Susan Caldwell community as long as it is in need. By of those affected by HD in the decades including HDSA in your will as a recipient to come. Estate of Charlotte F. Calhoun of estate, insurance, stock, and/or retirement plan gifts, you can create a For more information about Planned legacy of giving that will guarantee that Giving at HDSA, please contact Assistant Estate of Dean Gleckler future generations have the vital support Director of Major and Individual Giving necessary to confront this devastating Jon Hogan at 212.242.1968 ext. 232 or Estate of Katrin Heidelmeier illness. Among the many benefits of [email protected]. Estate of Jeanette D. Hersey Estate of Gary J. Hull Estate of Earl J. Jackson Estate of Thomas B. Johnson Estate of Wilma M. Jones Estate of Martha Sanders King Estate of Deborah Light Estate of Norma E. Novak Estate of Dorothy Schwope Every year at HDSA’s Convention, the Blue Light Ceremony is held in honor of those who have succumbed to Huntington’s disease.

18 19 HDSA 2016 ANNUAL REPORT HDSA 2016 ANNUAL REPORT Our Mission: To improve the lives of people with Huntington’s disease and their families. Our Vision: A world free of Huntington’s disease.

Huntington’s Disease Society of America

20 HDSA 2016 ANNUAL REPORT Help for Today, Hope for Tomorrow.

2016 Annual Report

HUNTINGTON’S DISEASE SOCIETY OF AMERICA 505 Eighth Avenue Suite 902 New York, NY 10018

212 242 1968 Helpline: 800 345 HDSA Email: [email protected] www.hdsa.org