Huntington’s Disease Society of America 2016 Year In Review

Turning Up the Volume on HD Awareness: #LetsTalkAboutHD

In 2016, HDSA launched the #LetsTalkAboutHD campaign. The viral social media initiative featured daily celebrity videos, family stories, photos and infographics discussing the devastating impact of Huntington’s disease. Huntington’s Disease Society of America 2016 Year In Review

Dedication

The HDSA 2016 Year in Review is dedicated to Anita Mark-Paul who spent 26 memorable years as a member of the HDSA Family. Anita brought so much joy to our organization and the families we serve. We miss her.

HDSA’s Mission and Vision

OUR MISSION: To improve the lives of everyone affected by Huntington’s disease and their families.

OUR VISION: A world free of Huntington’s disease. 2016 Year In Review

“In 2016, HDSA made unprecedented strides in awareness, advocacy, family support, youth programs, fundraising and research. More families have access to more resources and support because of efforts. None of this is possible without the volunteers and advocates who carry our mission from coast to coast. Thank you for leading the fight against HD!”

— LOUISE VETTER, HDSA CHIEF EXECUTIVE OFFICER

1 #LetsTalkAboutHD HDSA turned up the global volume on Huntington’s disease awareness by launching the incredibly successful #LetsTalkAboutHD campaign during HD Awareness Month in May. The viral social media initiative featured daily celebrity videos, family stories, photos and infographics discussing the devastating impact of Huntington’s disease. Celebrity support included: Mario Lopez, Scott Porter, Drew Brees, Joe Smith, the L.A. Angels, Vincent Piazza, Lisa Genova, Jake Dowell, Jerrod Niemann and many more!

HDSA Expands Centers of Excellence Program

In 2016, the HDSA Centers of Excellence program “The expansion of the HDSA Center of Excellence expanded to 39 Centers from 29 in 2015 — a 25% program to nearly forty clinical care centers means increase in the reach of the program. The HDSA that thousands of new families will have more Centers of Excellence share an resources and support in their fight exemplary commitment to bringing against HD,” said Louise Vetter, more comprehensive care to more HDSA’s Chief Executive Officer. HD affected families across the “We are incredibly grateful for the United States and will have more generosity of the HD community, ‘boots on the ground’ with locations in 30 US whose efforts make these awards possible, and states. HDSA allocated $1,092,250 to the Centers thankful for the dedication and commitment to of Excellence program which is a 38 percent increase world-class care that our HDSA Centers of in funding from the $790,000 awarded in 2015. Excellence provide.”

2 The Guthrie Sessions at HDSA 2016 Artists included: Dylan Brady, Betty Who, Second Annual Freeze HD Event JT Makoviecki, Carly Ritter, Mary Lambert, This year HDSA launched The Guthrie Sessions at The stars came out at the Bootleg Theater in Los Honey LaRochelle, Maya Azucena, Morgan Myles, HDSA to pay homage to our music roots and the Angeles to raise funds and awareness at the Second St. Lenox, Ben Lee and Zac Clark. Guthrie family legacy. The performances are edited Annual Freeze HD event. More than $200,000 was and directed by Rae Maxwell and has received raised to support HDSA and HDBuzz. Among the fabulous fanfare. Presented by many special guests in attendance were actresses Artists volunteer their time and talents to support Annette Bening and Marianna Palka as well as HDSA’s mission and pay tribute to Woody Guthrie. Jason, Tyler, Carly and Nancy Ritter. The event was Every Monday a new song from a monthly featured coordinated by actress Kate Miner and her family. artist is released on the HDSA YouTube Channel Kate’s mother and two sisters have tested positive and shared across HDSA’s social media platforms. with HD and have become incredible advocates in The program has reached thousands — introducing Stay tuned for more incredible performances in raising HD awareness and funds to support HDSA’s HD to new audiences around the globe. 2017 by visiting HDSA.org/GuthrieSessions. mission. The event also included special musical performances from Moon Child and Zac Clark.

HDSA Chairman Leads TEAM HDSA at New York City Marathon

TEAM HDSA consisted of twenty-four runners from families that was his best medicine. “I ran in honor across the United States who raised much-needed of the strongest fighters I know: HD patients and funds & awareness to fight Huntington’s disease at their families,” said Dr. Cha. the 2016 New York City Marathon. The team raised “My doctors were not thrilled to hear that I was more than $110,000 to support HDSA’s mission! going to be running the New York City Marathon This team’s highest fundraiser so soon. But, then again, what do doctors know,” was HDSA’s Chairman of the he jokingly added. Board of Trustees Dr. Jang-Ho For more information please visit Cha who raised nearly $13,000. HDSA.org/NYCMarathon Despite living a healthy lifestyle, Dr. Cha suffered an unexpected life-threatening stroke just 10-months prior to hitting the starting line. He received excellent medical treatment at Mass General Hospital in Boston, but he said it was the lessons he learned from HD

3 2016 BALTIMORE, MARYLAND The Huntington’s Disease Society of America welcomed nearly 930 guests to the 31st Annual HDSA Convention in st Baltimore, Maryland. Held at the Hyatt Regency Inner Harbor, 31 Annual the three-day event took place June 2nd through 4th and was the second most attended Convention in the organization’s history. The vast majority of attendees were individuals from HDSA Convention Huntington’s disease families, but they were joined by a global roster of researchers, social workers, clinicians, volunteers and advocates. “The Annual HDSA Convention is known for the extraordinary amount of valuable HD research and care information, but it is the magic and incredible bond created by the HD community at the largest gathering of this type in the world that makes Convention such a special event,” said Louise Vetter, HDSA’s CEO. “We are grateful to all of the sponsors, speakers, exhibitors and, most importantly, families who traveled to Baltimore to fuel the power and hope of the HD community.”

The Blue Light Ceremony held each year at HDSA’s Annual Convention commemorates those whose lives have been affected by Huntington’s disease.

4 HDSA had the highest sponsorship participation HDSA kicked off Convention on Thursday night with their and Jeff Carroll, Ph.D., from HDBuzz.net. Those in attendance ever — raising more than signature Team Hope Walk, followed by an Ocean City- also received in depth information on several clinical trials during $300,000. themed Boardwalk Bash Welcome Reception where guests the Clinical Trials Showcase. Special thanks to all of enjoyed delicious food, games and raffle prizes. The HDSA Convention Gala on Saturday night featured our generous sponsors: Radio host, author and 30-year caregiver Peter Huntington’s Disease the traditional blue light ceremony as guests paid tribute Society of America • Teva Rosenberger delivered an inspiring keynote to all who have fought and continue to fight this devastat- THIRTY-FIRST • Lundbeck address on Friday morning before families ANNUAL ing disease. National awards were given out to: HDSA • MetLife went off to take advantage of the valuable CONVENTION Person of the Year, Krissi Putansu; HDSA Marjorie Guthrie workshops that the HDSA Convention has JUNE 2-4, 2016 Awardee, James Valvano; Woody Guthrie Advocacy • Enroll-HD to offer. On Friday night, HDSA’s National Awardees, the HDSA National Youth Alliance Advocacy • Ionis Youth Alliance (NYA) entertained Board (Morgan McLane, Amanda Butterworth, • Vaccinex guests at the annual NYA Talent Show Melissa Ryant and Angela Mabry); HDSA Youth • Broda Seating where funds were raised towards NYA Awardees, Kirsten and Kierra Wood; and HDSA Convention Scholarships. Excellence in Care Award, Madeline Harrison, M.D. • Kindred Healthcare • Novacorr Saturday’s Research Forum provided promising HD science Retiring volunteer leader Steven Seekins was also recognized updates from world-class researchers. Speakers included: with an Award of Appreciation. Longtime convention staff • Archcare Walter Koroshetz, M.D., Director of NINDS; Robert Pacifici, member Bill Marsch was acknowledged for nearly 20 years • Genzyme/Sanofi of coordinating these incredible annual events. Ph.D., Chief Scientific Officer at CHDI; and Ed Wild, M.D., Ph.D., • Wave Life Sciences

Radio host and author Peter Rosenberger delivers the keynote address.

HDSA’s Chairman, Dr. Jang-Ho Cha and Chief Executive Officer, Louise Vetter, present Woody Guthrie Advocacy Awards to members of the HDSA National Youth Alliance Advocacy Board.

5 2016 HDSA NORTHWEST REGION UPPER MIDWEST Team Hope Walk Seattle REGION Regional Washington Chapter Minnesota Chapter’s Northern Plains Car Show Seattle, WA Blue Tie Gala Northern Plains Chapter Highlights Amount raised (net): $36,329 Minnesota Chapter West Jamestown, ND Number of attendees : 202 Minneapolis, MN Amount raised (net): $12,762 Amount raised (net): $37,942 Number of attendees: 100 Team Hope Walk Boise Number of attendees: 125 Thanks To Our National Idaho Affiliate West Jamestown, ND Event Sponsors Boise, ID Amount raised (net): $14,566 Number of attendees: 214

Sioux Falls, SD n National Team Hope Sponsor Team Hope Walk South Dakota n National Celebration South Dakota Chapter of Hope Sponsor Sioux Falls, SD Amount raised (net): $32,842 Number of attendees : 134

Boise, ID n National Team Hope Sponsor Team Hope Walk Spokane Washington Chapter Spokane, WA PACIFIC SOUTHWEST Amount raised (net): $11,695 REGION Number of attendees: 160

Freeze HD Event Celebration of Hope — San Francisco, CA Greater Los Angeles Chapter I Am Strong Los Angeles, CA Northern California Chapter Team Hope Walk San Francisco Amount raised (net): $163,914 Palo Alto, CA Northern California Chapter Number of attendees: 360 Amount raised (net): $152,347 San Francisco, CA Number of attendees: 447 Amount raised (net): $60,822 Number of attendees: 400 Los Angeles, CA , CO SOUTH CENTRAL REGION

Team Hope Walk Denver Team Hope Walk Team Hope Walk Rocky Mountain Chapter Dallas/Fort Worth South Houston Denver, CO Greater North Texas Affiliate Houston Affiliate Amount raised (net): $36,028 Frisco, TX Clear Lake, TX Number of attendees: 203 Amount raised (net): $15,304 Amount raised (net): $23,319 Number of attendees: 178 Number of attendees: 215 6 Dallas, TX GREAT LAKES REGION NEW ENGLAND REGION

Celebration of Hope Wiscconsin Chapter Re-Prom Celebration of Hope: James Bond Style Wisconsin Chapter A Day at the Oscars Northeast Ohio Affiliate Madison, WI Regional Event Cleveland, OH Amount raised (net): $59,218 Randolph, MA Amount raised (net): $130,127 Number of attendees: 240 Amount raised Number of attendees: 200 (net): $41,577 Number of Albany, NY Randolph, MA Cleveland, OH Team Hope Walk Liberty attendees: 170 Regional Event Liberty, MO Corks and Forks Event Team Hope Walk Tewksbury Amount raised (net): $66,118 Albany Chapter Massachusetts Chapter Number of attendees: 350 Albany NY Tewksbury, MA Amount raised (net): $51,341 Amount raised (net): $37,099 Number of attendees: 235 Number of attendees: 250 Madison, WI NEW YORK / MID ATLANTIC REGION NEW JERSEY REGION D.C. Blue Tie Gala Team Hope Walk NYC Washington D.C. Chapter Greater New York Chapter Washington.D.C. New York, NY Amount raised (net): $25,375 Amount raised (net): $81,053 Number of attendees: 150 Number of attendees: 186

Team Hope Walk Edison, NJ New Jersey Chapter New York, NY Edison, NJ Washington, D.C. Amount raised (net): $49,041 Edison, NJ Number of attendees: 220 Team Hope Walk Team Hope Walk Long Island Eastern Chapter Regional Event Philadelphia, PA West Babylon, NY Amount raised (net): $25,656 Amount raised (net): $37,124 Number of attendees: 293 Number of attendees: 250 Team Hope Walk Baltimore West Babylon, NY Central Maryland Affiliate Baltimore, MD Atlanta, GA Amount raised (net): $19,995 SOUTHEAST REGION Number of attendees: 100

South Florida HD Triathlon Team Hope Walk Atlanta Team Hope Walk Jacksonville Baltimore, MD South Florida Chapter Georgia Chapter Northern Florida Affiliate Miami, FL Atlanta, GA Jacksonville, FL Amount Raised (net): $54,410 Amount Raised (net): $36,156 Amount Raised (net): $18,925 Number of Attendees: 550 Number of Attendees: 120 Number of Attendees: 200

Miami, FL 7 HDSA Once Again 2016 Strike Out HD New York City Earns Top Rating from HDSA’s Annual Strike Out HD bowling event was held on Charity Watch and October 24th at Frames in New York City and raised more Charity Navigator than $55,000. The sold-out event was hosted by ABC News In late 2016 it was announced meteorologist Amy Freeze and co-chaired by HDSA Trustee that the Huntington’s Disease Jennifer Leyton and her husband Mark. Members Society of America once again of the New York Riveters women’s professional hockey achieved Top-Rating status from CharityWatch and team joined the 100+ guests for a fun night of bowling a Four-Star rating from with great food and drinks. Exciting auction items Charity Navigator. included a Henrik Lundqvist signed NY Rangers jersey, As two of the nation’s top non- Ryan McDonagh signed NY Rangers stick, NY Islanders profit evaluators, CharityWatch tickets, singing lessons with celebrity vocal coach and Charity Navigator perform Cari Cole, boxing lesson with celebrity trainer Eric Kelly, in-depth analyses of charities’ a Brooklyn Brewery tour experience and much more! audited financial statements and IRS tax filings, and often ABC ‘s Amy Freeze (third from left) with Jennifer Leyton and son, Jeffrey, members of the NY Riveters hockey team. at HDSA’s Strike Out HD event.

HDSA Provides 1,000 Free Liftware Level Devices The Huntington’s Disease Society of America , in partnership Liftware Levels help people with limited hand and arm mobility review other documents such as state filings, annual reports, with Teva Pharmaceuticals, launched a program that provide hold a utensil at the angle needed to eat more easily. and fundraising contracts during 1,000 free Liftware Level Starter Kits to HD families in need. “HDSA is thankful to Teva Pharmaceuticals for providing the their evaluations. necessary support which allows us to distribute this valuable “We are delighted to hear that resource to HD families in need,” said Louise Vetter, HDSA HDSA has received such im- CEO. “Liftware’s innovative product will make a significant pressive feedback from Charity impact on the quality of life of people with HD suffering Navigator and CharityWatch,” said Louise Vetter HDSA CEO. from chorea.” “Being fiscally responsible and Devices will be given to people with HD currently transparent with our financials suffering with mild to moderate chorea on a first come, first is one of the major pillars we serve basis. Requests can be submitted through the HDSA rely on to protect the integrity of HDSA.” website at HDSA.org/Liftware.

8 HDSA Human Biology Project In November, the Huntington’s Disease Society of The winners and titles of the 2016 HDSA America announced that nine research grants have HD Human Biology Project Grants are: been awarded under the Society’s largest research Dr. Madeleine Sharp initiative, the HDSA Huntington’s Disease Human Assistant Professor, McGill University, Canada Biology Project. Totaling $930,000, these grants Striatal-dependent reward processing: A substrate represent HDSA’s patient-centric research focus for early behavioral symptoms in Huntington’s which brings basic and clinical disease researchers together to facilitate Huntington’s Dr. Wasim Malik disease science in the human Assistant Professor, Harvard Medical School/ condition, instead of in animal Massachusetts General Hospital models, with the direct Oculomotor assessment as a potential biomarker participation of people affected for Huntington’s disease by Huntington’s disease. Steven Marinero Dr. Lisa Salazar “Now in its fourth year, the HD Human Biology Graduate Student, Duke University Assistant Project Scientist, Project is the perfect combination of innovative Brain infiltration of peripheral blood mononuclear University of California at Irvine patient-focused research and development of the cells in driving neurodegeneration in Huntington’s Molecular and cellular assessment of huntingtin world’s brightest young scientists to ensure a robust disease lowering in differentiated patient-derived HD iPSCs. pipeline of researchers for the future”, said George Dr. Natalia Pessoa Rocha Yohrling, Ph.D., Senior Director, Mission and Charles Mosier Research Fellow, University of Texas Scientific Affairs at HDSA. “This year’s fellows Research Associate Health Science Center at Houston represent the best in pursuits of novel HD human University of California at San Diego Microglial activation in HD: A structural biology from all around the globe, and their research Proximal Huntingtin Protein Interaction Networks and functional study will push the boundaries of HD knowledge to inform in Human Juvenile and Early Adult HD Brains vital topics such as Juvenile-onset HD, biomarker Alan Phipps Analyzed by Proteomics and Systems Biology identification, stem cell technology and Graduate Student, University Dr. Veronica Ines Brito symptomatic treatment.” Efficacy of tDCS for improving gait in HD Research Fellow, University of Barcelona HDSA received applications from researchers Dr. Rocio Gomez-Pastor Medical School from all around the world. Ultimately, grants Research Fellow, Duke University Study of mitochondrial outcomes as biomarkers of were awarded to nine research fellows, from the Prevention of subnormal degradation of the neuronal Huntington´s Disease progression and/or readouts United States, Canada and Spain. protective factor HSF1 in Huntington’s disease. of pharmacological interventions

9 RESEARCH SUPPORT & SERVICES

2016 HDSA EDUCATION Mission Reports

ADVOCACY YOUTH PROGRAMS

10 RESEARCH REPORT

SUPPORT & SERVICES In HD Science, the Momentum Is Building

et’s reflect on all the exciting progress that has In just four years, HDSA has now committed more out if they will work for HD is to test them in people. L been generated in the HD research community than $3 million to the HD Human Biology Project. 2017 and beyond will provide many additional over the past year. The Human Biology Project is a critical piece of opportunities to get involved in HD clinical trials. In 2016, HD clinical trials from Teva, Pfizer and HDSA’s mission to support impactful HD research We have no doubt that the HD community will Vaccinex all completed their recruitment. The that will help guide us closer to effective therapies. continue to rise to these challenges. Enroll-HD registry and observational platform The research we support is all patient-centric and I am confident you will agree with me that in 2016 enrolled its 10,000th participant. A novel new drug done in collaboration with HD clinics from around HDSA and the research community have made to combat the motor symptoms associated with the globe with the goal of understanding HD in the tremendous progress towards meaningful clinical HD was submitted to the FDA for approval. Ionis only place it naturally occurs, in humans. In this trials that will hopefully modify the course of HD Pharmaceuticals announced that they have started report you will see summaries of the nine new and bring relief and hope to you — our HD families. administering the highest and final dose of their research projects HDSA is supporting. George Yohrling, Ph.D. antisense oligonucleotide (ASO) to early stage HD A new research grant program — the Berman- HDSA Senior Director, Mission & Scientific Affairs patients in the first of its kind study to investigate Topper Family HD Career Development Fellowship a huntingtin lowering drug. Finally, a new study — was introduced in late 2015 to provide young was initiated by Azevan here in the US to see if scientists with the time and resources to allow them their drug could improve irritability and aggression to transition into an independent HD investigator. in HD patients. These achievements all have one thing in common. Research and care programs at Huntington’s They could not have been achieved without the Disease Society of America (HDSA) demonstrated participation of HD families. We are indebted to the great progress in 2016 as well. HDSA expanded brave HD research heroes around the world who their network of Clinical Centers of Excellence to volunteer selflessly so that we will not have to wait 39 across 30 states. We continued to expand our another generation for effective HD treatments. patient-focused research commitments and Today, there are approximately 10 companies launched a call center for HD TrialFinder to actively pursuing different approaches to reduce provide families more support as they consider huntingtin, the root cause of HD. While the tech- which clinical trials to take part in. nologies hold great promise, the only way to figure

11 SUPPORT & SERVICES REPORT

HDSA Provides More Help For Today Than Ever Before

continued to be a busy year for but also at two other regional meetings in the supportive counseling, answer questions about 2016 services provided to families Midwest and Southwest. These educational events genetic testing, long term care placement, disability throughout the country. Social workers at HDSA help social workers provide the best and most up to and referrals to local resources. Social workers also Centers of Excellence, Chapters, Regions and other date information on assisting HD families with HD interact with professionals in their communities HD clinics assist families in 40 states and across concerns. HDSA continues to provide a Helpline for including presentations to medical students, their borders. HDSA received extra funding this year families and to refer to the Chapter and Regional genetic students, social work and behavioral health to bring social workers together not only at the social workers who respond to thousands of students, law enforcement personnel, assist in annual HDSA Convention for professional training, requests for information about HD, provide educational day events, provide in-services to long term care facilities or other health agencies and participate in National Youth Alliance (NYA) retreats. Many families find much-needed support at HDSA support groups that are available in 44 states. Groups help families understand and normalize the symptoms that can occur in HD persons and benefits are felt both by caregivers and HD persons. All of these services can be found through on HDSA.org using the Locate Resources tab to find services in your area..

Anne Leserman, LCSW HDSA Assistant Director of Community Service

12 EDUCATION REPORT

Across the Nation, HDSA Continues to Educate More Communities About HD

had a busy year developing educational programs to our HD families across the HDSA was also busy creating new publications HDSA educational programs for United States. Thanks to a generous unrestricted for our families. In early 2016, HDSA published both our allied healthcare professionals and our educational grant from Teva, HDSA supported A Caregiver Guide for HD Families which addresses HD families. For our healthcare professionals, 35 educational events and guest speakers to 10 issues pertinent to family caregivers along the HDSA launched a five part cooperative continuing support groups. Nearly 4,000 HD family members continuum of the disease. The new guide is meant education program with the American Physical attended an event and we are excited by the to assist family caregivers and covers many of the Therapy Association/Neurology Division (APTA) number of families this program reaches each year! topics included in the Caregiver Guide for Mid to in December 2015 to educate community based Late Stage HD for Long Term Care and In-Home Care physical therapists. The idea behind the program Agencies but from a family perspective. HDSA also was to increase access to physical therapy in local updated the Family Guide to Huntington’s Disease communities by providing licensed PTs with the and is in the process of re-printing both the Family knowledge they need to apply their skills to assessing Guide to Nutrition and HD and Caregiver’s Guide to and treating a person with HD. To date, 61 physical Communicating with Healthcare Providers. Both therapists who successfully completed one or more pamphlets are ready to be distributed in 2017. modules have agreed to be listed on the HDSA These publications are available free of charge and website as a resource. can be downloaded by going to: hdsa.org/shop/ In January, HDSA launched a four part continuing publications/. education course for community based occupational The Annual HDSA Convention offered more than Debra Lovecky therapists in partnership with the American 40 workshops in 9 tracks to our HD families. New HDSA Director of Educational Programs Occupational Therapy Association (AOTA) in features for 2016 included an Ask the Expert table order to educate community based occupational with rotating experts and topics each hour and the therapists on what they needed to know about HD return of the HD Activity Center for Persons with in order to assess and treat persons with HD in their HD. HDSA streamed 14 workshops and plenary communities. A list of occupational therapists will sessions including the Opening Ceremony and be added to the HDSA website in early 2017. keynote speaker on Friday and the Research Forum Once again, HDSA was able to provide funding (parts 1 and 2) on Saturday. The streamed sessions to our chapters, affiliates,Centers of Excellence are available for viewing on HDSA’s web site and support groups to support half or full day —HDSA.org/Convention.

13 ADVOCACY REPORT

HD Voices Heard Loud & Clear

was a banner year for Advocacy! when evaluating an application for disability. This is a had kept us from moving forward, but because of 2016 This year, advocates from all corners change we have been working towards for years, and work from a National Youth Alliance advocate in of the HD community got engaged in the effort to it is an incredible achievement for the HD Community. Michigan, high ranking Members of Congress pass the Huntington’s Disease Parity Act and to see When the SSA asked for comments to proposed pressure on CBO to score our bill and they finally positive changes for families affected by Huntington’s changes to the disability guidelines, more than 33% came through. With these pieces in place, we are disease. We saw major victories in 2016, including of the comments received were from HD advocates. well set up to see the HD Parity Act pass at the the release and implementation of new guidelines for That is an incredible number, and without the work of beginning of the 115th Congress in 2017. Because HD by the Social Security Administration (SSA). advocates like you we couldn’t have achieved this advocates like you across the country got engaged in As of September 29, 2016 the Social Security major goal for the HD community. the fight to pass the HD Parity Act, we are confident Administration will take into account the cognitive We have also made major strides ahead in the fight that this bill will make it over the finish line! and behavioral symptoms of Huntington’s disease to pass the Huntington’s Disease Parity Act. In the Advocates also came out in force to tell the Food and 114th Congress, we signed on 264 bi-partisan Drug Administration that we need new treatments co-sponsors in the House of Representatives, for HD. In just over one month, almost 4,000 including 112 Republicans. These numbers blow all members of the HD Community signed their names our previous efforts out of the water. With the Social and told their stories in a petition asking the FDA to Security Administration’s updates to the guidelines allow SD-809 a speedy and community-focused for HD, we have one piece of the puzzle left. We are review. As a result, the FDA has accepted a new still working to waive the 2-year Medicare waiting review of the drug with priority status. period for folks with HD, and we won’t stop working And last but certainly not least, Congress passed until we achieve this goal. Advocate efforts in 2016 the 21st Century Cures Act. This is a bill which the advocates helped the HD Parity Act clear major HD community rallied behind with many rare hurdles, including receiving a score from the Con- disease organizations, and as a result we will see gressional Budget Office. This procedural roadblock vast increases in funding to the National Institutes of Health for research into neurological diseases. The legislation also creates a new initiative to better assess the prevalence rates and access to care for rare neurological diseases like Huntington’s disease.

Jennifer Simpson, LMSW Manager of Advocacy & Youth Programs

14 Thank you to TEVA PHARMACEUTICALS YOUTH PROGRAMS REPORT for sponsoring HDSA Advocacy and Youth Programs. More Programs Assisting HD Youth

n 2016 HDSA’s National Youth Alliance (NYA) goodbye to Angela Mabry as she stepped down as ship for youth programming breathed life into the I grew leaps and bounds! For the first time ever, the Chair of the NYA Board. Angela has been an NYA Youth Retreats. MaryAnn’s unending passion NYA hosted multiple youth programming events incredible leader for the National Youth Alliance, and energy for the NYA is already helping to bring around the country. The NYA hosted three NYA helping coalesce the many needs and interests of even more young people community and support, Regional Youth Retreats in 2016 in collaboration youth affected by HD into a singular vision. Angela and we are incredibly happy to have MaryAnn with local Chapters and HDSA Centers helped pave the pathway forward for the leading the NYA into this amazing new territory of Excellence. With funding from Teva NYA to become a leader in providing youth as the new Chair! Pharmaceuticals, the National Youth programming, support, engagement and Jennifer Simpson, LMSW Alliance held free, day-long retreats in education to young people affected by HD. Manager of Advocacy Pittsburgh, Iowa City and Denver, We are so grateful for all the work Angela did and Youth Programs bringing 42 young people together to for the NYA, and for her enduring contribu- laugh, learn, and feel connected to other tions to young people young people affected by this terrible disease. With affected by HD! Filling these accommodations and meals covered by the NYA, shoes is MaryAnn Emerick, young people and their parents were able to attend an energetic, dedicated young to discuss important topics like “What to Expect from adult who is committed to Genetic Testing”, “Grief and Loss”, “Youth Caregiving” growing the NYA even further, and “Telling Your Story”. The NYA made sure to pack and whose vision and leader- in the fun as well, hosting game breaks during the day and capping off the retreats with an evening of fun inside a Video Game Truck! With the success of the NYA Youth Retreats, we are expecting to expand to an additional city in 2017, hosting four Youth Retreats around the country and including travel costs for attendees. If you want to know more about the youth retreats, sign up to receive e-mail updates from the NYA at www.nya.hdsa.org! The NYA also saw a change in leadership this year. With great sadness and appreciation we said

15 Q&A WITH ADVENTURER JASON EVANS Why I Take On Treacherous Journeys for HDSA

orn in Roseburg, , Jason Evans is a farmer, writer, philosopher and avid outdoorsman who lived overseas for years when his parents took teaching positions in England, Norway and Malaysia. He Bgraduated high school in Malaysia, earned a bachelor’s degree in English literature and philosophy at Hiram College in Ohio, and studied philosophy at New York City’s New School before returning to the Pacific Northwest to raise his family.

16 How has HD impacted your life? continue efforts for effective treatments and a cure. and wet, when I couldn’t properly dry out, were a Eight years ago my grandpa and mom were simulta- I hike in the hope risks to future generations will slog, and to keep moving was the only way to neously diagnosed with Huntington’s disease. After someday be mitigated. survive. Moments with a wolf, a lynx, and a grizzly were serene and special; perhaps more impactful they were diagnosed, I elected to be tested and What were some of the challenges during this were myriad encounters with pine martens and discovered that I also carry the mutated gene. My year’s hike on the Continental Divide Trail? two sons have a 50% chance of inheriting it as well. marmots, the antics of lizards, a woodpecker The single greatest hardship was remaining spiritu- tapping a tree in the near distance, and pausing to I was crushed to have lost my grandpa to complica- ally strong despite the fact I didn’t get the support visit with a badger or wolverine. Missing my dog, tions of HD a few years ago, and to the symptoms of from sponsors I hoped for, and so was often unsure kiddos, wife and friends was palpable; but I was HD long before he passed. Mom is always more a if I would have access to funds to resupply/replace never lonely – reveling in solitude and the reflection shadow of her formal self, and yet a fixture. Struggle it affords. swallowing and adventuring in her environment is a dance. Her wry smile still makes mine. We have fun, What Message Do You Have For HD families? and her part of me feeling In many ways, those of us with HD will become home is the world to me. I shadows of our former selves. I hike for the would give anything for my important places each of our shadows hold. kiddos to have known her as I did when I was young. Still, Forever a wanderer reveling in the range of light, every time I see her, she all are welcome to friend and follow me on amazes me in her thoughtful FaceBook, to peruse my photo albums, discover trail consideration and ability to stories and share the next adventure. Check out my YouTube video on my hike across the Pacific Coast communicate all the same. gear and keep going when I got near town. On Trail for HDSA — Shadow Walking by Jason Evans. several occasions I ran out of water in the desert, What long distance trails have you hiked solo to Stay tuned for an upcoming video about where expected sources were dry, and had to push raise funds & awareness for HDSA? the Continental Divide Trail, in addition to a on. Disconcerting to say the least. Ran out of food documentary all about long distance trails and This year I completed the Continental Divide Trail on a couple occasions too, particularly when slowed HD in my family. (3,100 miles). I hiked the Pacific Crest Trail (2,669 by snow in Southern . Many of the most miles) in 2014. I hike alone for the adventure, to dangerous snowy traverses I picked over at night honor the memory of my grandfather, and with hope when snow was firmer — chipping one inch foot for my boys at risk. The trail is a metaphor we lose or holds with my trail runners. A slip could have been a find. The great outdoors has always been my muse, 500 foot uncontrolled slide and off a cliff. Extreme whether scuba diving, cross-country skiing, hiking, focus is profound and exhilarating. Several stumbles camping, or fishing and canoeing with the family. upon timber rattlers in the Gila National Forest lent I hope people from around the world will consider perspective; they didn’t warn me I was close. donating a penny-per-mile. Together we can make a Coyotes, javelinas, and black bears threatened to difference. The funds support HDSA’s mission to raid my camps some sleepless nights. Days muddy Special thanks to our corporate partners for their educational grants and charitable gifts that enabled HDSA to provide and create new Huntington’s Disease resources for the HD Community in 2016. Society of America In particular we extend our gratitude to Teva Pharmaceuticals for their support of HDSA’s Official Corporate Leadership Council and to Lundbeck Pharmaceuticals for their continued generous support.

SAVE THE DATES!

Join us for the 32ND ANNUAL HDSA CONVENTION right outside of Chicago at the elegant Renaissance Schaumburg Hotel and Convention Center. JUNE 22-24, 2017 SCHAUMBURG, IL

HDSA BOARD OF TRUSTEES HDSA STAFF LEADERSHIP HUNTINGTON’S DISEASE SOCIETY OF AMERICA Arik Johnson, Psy.D. Dan Brennan Louise Vetter 505 Eighth Avenue Chairman of the Board President & Stacy Coen Chief Executive Officer Suite 902 E.J. Garner Hugh de Loayza New York, NY 10018 Chairman-Elect George Yohrling, Ph.D. Gerald Francese. Esq. Senior Director, 800-345-HDSA Daniel S. Vandivort Mission & Scientific Affairs Treasurer Samuel Frank, M.D. 212-242-1968 (National Office) Nadene Alleyne Michelle Gray, Ph.D. Jennifer Leyton Director of Financial and www.hdsa.org Secretary Donald S. Higgins, Jr., M.D. Administrative Management

Jang-Ho Cha, M.D., Ph.D. Bill Kline Christopher Cosentino Past Chair Michael Roth Director of Marketing and Communications Arvind Sreedharan Nancy A. Rhodes Victor Sung, M.D. Director of Field Development and Operations © 2017 Huntington’s Disease Society of America All Rights Reserved.