2020 WAS TOUGH, BUT... THE FIGHT AGAINST HD WILL NOT STOP

CONTENTS Dear Friends of HDSA, Like you, the team at the Huntington’s Disease In early 2020, we expanded HDSA’s Center We cannot thank them enough for their creativity Society of America is ready to leave 2020 behind us of Excellence program to a record 50 HD care and hard work in organizing so many creative PRESIDENT & CEO MESSAGE 1 and prepare for a very bright future. The COVID-19 teams with six satellite sites across the country. stay-at-home events. pandemic forced us to make adjustments to every- We funded four research grants under the Society’s From scavenger hunts and wine tastings to Virtual thing from our everyday lives to the way we do HDSA CENTERS OF EXCELLENCE 2 largest research initiative, the HDSA Huntington’s Team Hope Walks and Celebrations of Hope, business. Despite these extraordinary challenges, Disease Human Biology Project. We also awarded HDSA’s amazing community continued to raise much RESEARCH FUNDING 3 HDSA remained firmly focused on our mission to Dr. Yasaman Gholamalipour from the University of needed funds to support our programs of education, improve the lives of everyone with Huntington’s Massachusetts Medical School with the prestigious support, advocacy and research. The virtual 2020 HIGHLIGHTS 6 disease and their families. Berman-Topper Family HD Career Development Sixth Annual Freeze HD event raised more than Fellowship, and we named five2020 Donald A. King 2020 MISSION REPORTS 18 Without hesitation, we transitioned from in-person $223,000 and generated an enormous amount events to virtual gatherings to continue to support Summer Research Fellowships, a vital program to of awareness thanks to the work of the Freeze HD Research 18 HD families across the country in the safest and most train the next-generation of scientists with research Committee. Advocacy 19 accessible manner. Thanks to the inspiring generos- expertise in Huntington’s disease. 2020 was definitely a year to put in our rear view Education 20 ity of our donors and loyal corporate partners, Although we would have loved to have seen everyone mirror, but the challenges we faced only made us Youth Programs 21 HDSA did not cut any of the vital support services th in New Orleans for the 35 Annual HDSA Convention, stronger. At HDSA we evolved to strengthen our that HD families need, especially during the Support & Services 22 we quickly transitioned to a completely virtual connection to HD families through virtual events and pandemic. Disability Programs 23 event which welcomed more than 6,200 live resources without losing the inspiration and hope In fact, because of COVID-19 we saw a huge increase viewers from 93 countries! This record-setting that the HDSA community provides — and requires. TH 36 ANNUAL HDSA CONVENTION 24 in the use of HDSA’s free online support services, participation was made possible by the commitment Thank you for your continued support in the fight such as online support groups and telehealth of our speakers, exhibitors and sponsors and the MISSION & VISION against Huntington’s disease. If 2020 taught us counseling, as well as HDSA’s nationwide network dedicated volunteers who ensured that the help anything, it’s that it will take much more than a global STATEMENTS Inside Back Cover of social workers. Our website, HDSA.org, became and hope that defines HDSA’s Conventions was pandemic to keep HD families from fighting for the an even more important cornerstone for families preserved and expanded in this new format. BOARD OF TRUSTEES Inside Back Cover ones they love. seeking information and resources, and HDSA’s Hopefully we will be able to bring Convention library of webinars and video resources grew to meet to Spokane, Washington in early June 2021, Gratefully, STAFF LEADERSHIP Inside Back Cover the increased demand. but regardless, robust online Convention content will be an important part of our commitment to HDSA CONTACT & In addition to our world-class support services, we the HD community. SERVICES INFORMATION Back Cover continued to push HD care and research forward with Louise Vetter The critical mission work of HDSA is made possible direct investments to support HD clinics and science. President & Chief Executive Officer by the fundraising of our dedicated volunteers.

1 RESEARCH FUNDING

HDSA Centers of Excellence Expands to 50 Sites First HD Patients Dosed In uniQure Gene 2020 Berman-Topper Family Therapy Study at HDSA Center of Excellence HD Career Development Fellowship Early in the year, the Huntington’s Disease Society of America announced that fifty outstanding Huntington’s disease care facilities have been In June, the first two patients were dosed in the In May, HDSA announced that Dr. Yasaman awarded the designation of HDSA Centers of Excellence for 2020. world’s first gene therapy study for HD. On June 19th, Gholamalipour from the University of uniQure announced in a press release that two Massachusetts Medical School was awarded The 2020 HDSA Centers of Excellence program brave participants had undergone the brain surgery the 2020 HDSA Berman-Topper Family expanded to 50 Centers from 47 in 2019, and required to deliver the experimental huntingtin- HD Career Development Fellowship. from just 20 in 2015. The four new Centers lowering therapy of Excellence are: Henry Ford Hospital This prestigious fellowship, made possible due to AMT-130. The (Michigan), Stony Brook University Hospital the generosity of the Berman and Topper families, surgeries took place (New York), University of Kansas Medical provides up to $80,000 of funding per year for at the Ohio State Center, and the University of Miami (Florida). three years to young scientists and clinicians who University’s Wexner Medical Center, which is The HDSA Centers of Excellence are multi- desire to make Huntington’s disease part of their a designated HDSA Center of Excellence. The drug disciplinary care teams with expertise in long-term career plan. is a harmless virus that contains the instructions to Huntington’s disease that share an exemplary create a genetic weapon, a micro-RNA, that stops “On behalf of the Topper and Berman families, commitment to providing comprehensive care. the huntingtin message from creating new toxic I would like to congratulate Dr. Gholamalipour on The strategic expansion of the Center of Excellence program allows HDSA protein. This is a small and slow-moving safety trial, being named the 2020 recipient of this fellowship,” to increase access to expert HD clinical care and clinical trial opportunities with 26 planned participants who will be followed said Michael Berman. “Dr. Gholamalipour joins a to more families across the United States. With new Centers in Florida, closely for up to five years. terrific group of young scientists who have added Kansas, Michigan, and New York, HDSA now offers care locations in both knowledge and enthusiasm to the field of HD 33 states plus the District of Columbia. This year, HDSA will be awarding research, and we are sure that her contribution will a total of $1,550,000 to the Centers of Excellence program. be significant.” Dr. Yasaman Gholamalipour To learn more about HDSA’s Centers of Excellence program please visit HDSA.org/COE. Dr. Ricardo Mouro-Pinto, Massachusetts General Hospital Striatum 2016 Dr. Tamara Mauri, McMaster University Previous Recipients 2017 Dr. Sarah Hernandez, University of California at Irvine of the Berman-Topper HD Career Development Dr. Rachel Harding, University of Toronto Fellowship 2018 Dr. Lauren Byrne, University College London 2019 Dr. Nicholas Caron, University of British Columbia HDSA CENTERS OF EXCELLENCE HDSA CENTERS

AMT-130 is injected into the striatum, a deep part of the brain affected in the early stages of Huntington’s disease. 2 3 HDSA Announced Five Winners of 2020 HDSA Awards Four 2020 Donald A. King Summer Research Fellowship HD Human Biology Project Fellowships

In May, HDSA announced the recipients of the 2020 Donald A. King Summer facilitate meaningful HD research to clarify the biological mechanisms under- In December, the Huntington’s Disease Society of Research Fellowships, a vital program to train the next-generation of scientists lying HD pathology. Applicants are evaluated by the quality of their personal America announced that four research grants have with research expertise in Huntington’s disease. Huntington’s disease is a rare, academic achievements, mentoring plan, experimental design, and the feasibility been awarded under the Society’s largest research hereditary neurodegenerative disorder currently affecting approximately 41,000 of achieving their scientific goals in a short summer timeframe. initiative, the HDSA Huntington’s Disease Human Americans. Biology Project. These grants represent HDSA’s After rigorous review by the HDSA’s Scientific Advisory Board, five young patient-centric research focus which brings basic The purpose of this fellowship program is two-fold: first, to attract the brightest scientists, the most in the history of this program, were awarded 2020 and clinical researchers together to facilitate young scientists into the field of Huntington’s disease research and second, to Donald A. King Summer Research Fellowships. Huntington’s disease science in the human condition — instead of in animal models — with the direct participation of people affected by HD. “The HDSA HD Human Biology Project was created to enable scientists to better understand Huntington’s Melanie Alpaugh, PhD Yifat Glikmann-Johnston, PhD disease in people,” said George Yohrling, PhD, Université Laval, Quebec City, Canada Monash University, Melbourne, Australia Chief Scientific and Mission Officer at HDSA. “Interrogating Blood Samples from Huntington’s Disease “Targeting the Huntington’s Disease Gut Microbiome” “Our 2020 fellows were selected by the Scientific Patients to Better Understand Cognitive Impairments” Advisory Board at HDSA because their work holds the promise of filling critical gaps in our current knowledge of HD.” HDSA received applications from researchers all Sophia Friedman Amber Keith Lav Patel Tasneem Sadok Kadambari Vyas around the world. Ultimately, grants were awarded Wellesley College University of California Ohio State University University of California University of Central Florida to research fellows from Australia, Canada, Sophia will complete her at Irvine Lav will spend time in the at Los Angeles Kadambari will be mentored Germany, and the United States. project at the Massachusetts Amber will be working lab of Richard Fishel, PhD, to Tasneem will work with by former HDSA Human At right are this year’s grant winners and Institute of Technology under the guidance of visualize DNA repair proteins Lindsay DeBiase, PhD, to Biology Fellow Dr. Amber project titles. with David Housman, PhD, Sarah Hernandez, PhD, a that affect the expansion of study how changes in energy Southwell and will study exploring genes known to 2017 HDSA Berman-Topper CAG repeats. production affect the brain’s aggression in mouse models alter the onset of Huntington’s Career Development Fellow- support cells in areas of Huntington’s disease. disease symptoms. ship recipient, in the laboratory vulnerable to HD. Simon Laganiere, MD Bjoern von Einem, PhD of Dr. Leslie Thompson, to Harvard Medical School, Boston, United States University Hospital Ulm, Ulm, Germany develop a model of the blood- brain barrier derived from “Identifying Novel Neuroimaging Biomarkers in Feasibility of Assessing mHTT and wtHTT mRNA Levels human cells. Early Pre-Manifest Huntington’s Disease” in CSF-Derived Exosomes”

4 5 2020 HIGHLIGHTS

ABC News Story The Guthrie Sessions at HDSA Guthrie Family Reunion Founder’s Day Of Giving on Huntington’s Disease with Clare Dunn Raises More Than $48,000 On May 28th HDSA partnered with the On July 3rd, ABC News collaborated with HDSA to On July 21st, country music star Clare Dunn took Woody Guthrie Center for Woody Guthrie’s Back for its second year, HDSA’s Founder’s Day of produce a powerful story on Huntington’s disease. part in The Guthrie Sessions at HDSA to support the “Family Reunion” presented by Woody Guthrie Giving paid tribute to our founder Marjorie Guthrie The 16-minute segment featured ABC News’ fight against HD. The night featured incredible new Publications Inc. Woody Guthrie on September 18th, anchor Linsey Davis following two families music from Clare and she welcomed guests to a Publications hosted this virtual fifty-three years after she grappling with the rare genetic disorder. virtual backstage afterparty where she could chat concert which raised more founded the Committee with fans via Zoom. The night raised more than than $1,300 to support to Combat Huntington’s You can see this video $1,500 for HDSA. HDSA also held two other virtual the fight against HD. Disease — today’s at HDSA.org/abcnews20 Guthrie Sessions featuring the bands BAILEN and This incredible night featured Huntington’s Disease AT LEFT: Scott and Kelsey Porter discuss The Barefoot Movement. wonderful music performances Society of America HD’s impact during an ABC News feature. from Guy Davis, Mary Gauthier, (HDSA). Thanks to an Check out The Guthrie Sessions at HDSA series Eliza Gilkyson, Sarah Lee Guthrie, anonymous donor matching the gifts, the HDSA Introduces at hdsa.org/guthriesessions HDSA’s Coffee Walk Jaimee Harris, Patterson Hood, Miner, 2020 Founder’s Day of Giving raised $48,592! Ito Smith ‘Socks It’ to HD HDSA Films Presents Allie & Joe YouTube Video Series Joel Rafael and Marc Scibilia. Atlanta Falcons running back, Ito Smith, HDSA Films present a powerful short HDSA hit the streets this supported HDSA through the NFL’s film about sports reporter Allie LaForce year armed with a coffee Marc Scibilia Celebrates 80th Anniversary of Woody Guthrie’s This Land Is Your Land #32Team32Socks campaign. The initiative invited and major league pitcher Joe Smith. and a camera to ask HD Singer/songwriter and dear friend of HDSA, Marc Scibilia, performed a special rendition of the a player from all 32 NFL teams to design a pair of The couple discuss Huntington’s disease questions. socks to support their favorite nonprofit organiza- and their journey through PGD-IVF to have Woody Guthrie classic, This Land Is Your Land. This year marked the 80th anniversary of the tion. Ito comes from an HD family and was eager an HD-free child. You can see episodes of HDSA’s Coffee Walk at release of this iconic song. to support the fight to end this devastating brain HDSA.org/coffeewalk Watch the film at HDSA.org/allieandjoe Marc’s exclusive performance can be viewed on HDSA’s YouTube Channel. disorder. Ito’s socks raised $500 for HDSA. ABOVE: George Yohrling, PhD, HDSA’s Chief Scientific Thank you Ito! This Land Is Your Land! Officer and Chief Mission Officer (at left) chats with Christopher Cosentino, HDSA’s Director, Marketing and Communications in an episode of HDSA’s Coffee Walk. Ito Smith AT LEFT: Houston Astros’ pitcher Joe Smith with his wife, Turner Sports reporter Allie LaForce in a scene from HDSA Film’s ‘Allie & Joe’. Marc Scibilia

Clare Dunn

6 7 Virtual Sixth Annual Freeze HD Event Raises More Than $223,000 for HDSA 1

A global audience of nearly 4,000 tuned into the Marianna Palka, Gayle Rankin, Jason Ritter, th Virtual 6 Annual Freeze HD event on Saturday, Joe Smith, Rod Man, Britney Young and many 2 Thank You to Our 16 September 26th which raised more than $223,000 more. There were also extraordinary music to support the fight against Huntington’s disease. performances by Zac Barnett, Shoshana Bean, Generous Sponsors! Due to the COVID-19 pandemic, the Huntington’s Brian Logan Dales, Leslie Powell, The Edge Effect GOLD SPONSORS 17 Disease Society of America transitioned the world’s and Tyson Ritter. n Genentech largest and most-anticipated HD fundraising event n 3 15 The bidding in the Virtual Auction was fierce up Neurocrine to a virtual format. Hosted live by actor Scott Porter n until the last second. 2,037 bids were placed uniQure from a secure location in Los Angeles, Freeze HD 4 14 throughout the evening on more than 100 auction featured an incredible online auction, live music SILVER SPONSORS items, but the most coveted was a Supernatural n with Brian Logan Dales from The Summer Set Bel Aire Internet television series memorabilia package donated by n and dozens of videos from celebrities offering Marron Foods Jared Padalecki that garnered 193 bids! n their support in the fight against HD. Wave Life Sciences Immediately following the Freeze HD program, BRONZE SPONSORS “Each year, Freeze HD is star-studded call to action 13 guests who donated at least $50.00 were invited to n 5 to stop Huntington’s disease in its tracks. While Fake Empire an exclusive VIP Afterparty hosted by comedian n we missed gathering in person, hosting the event Keyes Real Estate Rod Man. The hour-long Zoom event featured an n virtually reached the global HD community and Temple Hill Productions opportunity to meet Kate Miner, Marianna Palka, allowed more families to connect and be inspired Scott Porter and Jason Ritter, as well as take part BAR SPONSORS in this fight,” said HDSA’s President & CEO n in a fun trivia game that gave away a $100 Amazon After Hours Theatre Company Louise Vetter. “This was a Herculean task by our n 6 12 gift card to the winner. Jessica & Tammy Cain host Scott Porter, event founders Marianna Palka Phil & Tamar Koosed 11 7 and Jason Ritter, and the entire Host Committee, Thank you to the Freeze HD Host Committee: n Netflix who donated their time and immense talent to Angelique Cabral, Jessica Cain, Kipenzi Chidinma, n Twelve Rivers Realty make Freeze HD such a success.” Chris & Lisa Davis, Brian Logan Dales, Blake & n Warner Brothers 9 Jenne Coler-Dark, Jessica Etting, Matt & Courtney The event honored the lives of Hurumia Chidinma Hamilton, Gentille Koosed, Jaylen Moore & Britt FRIEND SPONSORS and Terry Palka and featured appearances by n 8 10 Logan, Justin & Kate Miner, Elliott & Tracy Owen, Brillstein Entertainment Partners Shakira Barrera, Wilson Bethel, Rachel Bilson, n Kelsey Porter, Carly Ritter, Nancy Morgan Ritter, Blake & Jenne Coler-Dark Alison Brie, India De Beaufort, Tom Ellis, Noel n Tyler & Lelia Ritter, Emily & Jamie Rodgers, Alana Fidelity National Title Fisher, Courtney Friel, Neil Gaiman, Kimmy n Yankowitz and Jason Ziven. NRE Commercial Real Estate Gatewood, Seth Green, Rebekka Johnson, Bryce n Carly Ritter Dallas Howard, Allie LaForce, Rachel McAdams, To donate or to view the 2020 Virtual Freeze HD 1. Thank you to our generous sponsors! 2. HDSA President & C.E.O., Louise Vetter 3. Zac Barnett performs 4. Virtual Freeze HD host Scott Porter with auction items display 5. Jason Ritter Kate Miner, Jaylen Moore, Lamorne Morris, event, visit HDSA.org/freeze-hd 6. Marianna Palka 7. Alison Brie 8. Scott Porter joins Brian Logan Dales and guitarist, Matt Beckley in song 9. Tyson Ritter sings 10. Kate Miner 11. Last year’s Freeze HD host, actor and comedian Lamorne Morris, checks in 12. Seth Green 13. Rachel McAdams 14. Tom Ellis 15. Kipenzi and Majrjani Chidinma 16. Scott and Kelsey Porter with children — all part of the HDSA family! 17. Scott Porter joins the acapella group, The Edge Effect, in a rousing rendition of the Beatles’ classic, Come Together.

8 9 One Dime at a Time! HDSA Board of Trustees #GivingTuesday NYA Adopts a New Logo Michigan-native Ashley Greenway reached her Dr. Victor Sung has Thanks to the generosity of the HD community, goal of $10,000 by collecting soda cans through- seamlessly stepped more than $146,500 was donated to support This year, out her community. In Michigan, each returned into his new role as HDSA’s fight against Huntington’s disease during HDSA’s National can is worth ten cents. She collected cans through- Chair of HDSA’s the two #GivingTuesday initiatives in 2020. Youth Alliance out the year from her entire town. She would do National Board (NYA) received a #GivingTuesdayNow in May raised $73,000 pick-ups from neighbors and friends almost every of Trustees after makeover with a new while #GivingTuesday in December garnered day. Quick math says she collected 100,000 cans! E.J. Garner served logo as this inspiring group more than $73,500! her two-year term. continued their mission to improve the lives of AT LEFT: Ashley Greenway and family. HDSA thanks E.J. Additionally, HDSA staff members Allison Bartlett, young people affected by HD and their families. for her amazing Deb Boyd, Chris Cosentino, Jamison Skala and Louise Learn more about HDSA’s National Youth Alliance work as Chair as Vetter represented TEAM HDSA during the Global Virtual Marathons by visiting HDSA.org/NYA. well as Gateway Advisors Charity Trivia Night on #GivingTuesday Journalist Yousef Gamal El-Din Stacy Coen, who comes from an HD family and is a member of the HDSA’s National Board of Trustees, Dr. Don Higgins, in December. The team was crowned the tournament Supports HDSA did not let the COVID-19 pandemic stop her from running 26.2 miles. Although the 2020 New York City Dr. Arik Johnson, champion and won $4,750 for HDSA! Prominent international journalist Yousef Gamal Marathon was cancelled, Stacy still raised more than $10,425 to support the fight against Huntington’s and Dan Vandivort El-Din comes from an HD family and his mother disease. Thank you Stacy! who have also passed away from the disease after a brave 20 year finished their time on HDSA’s ‘Team Run for HD’ raised more than $39,400 virtually at the Chicago Marathon. Thank you battle. In December, Yousef shared an inspiring PSA HDSA’s Board of Trustees. HDSA welcomes to HDSA’s four dedicated members: Laura Rouse, Claire Sanders, Gail Shurlow and Maddie Snowdon. OVER supporting HDSA and encouraging folks around the new Board members Angela Allen, Mark Coe, world to join the fight against Huntington’s disease. 1. Stacy Coen (inset) strikes a strong “Cure HD” pose before her Dr. Erin Furr-Stimming, Kelsey Porter and run. 2. Claire Sanders (r.) with supporter. 3. Gail Shurlow receives Dominique Thomas. You can view #LetsTalkAboutHD with Yousef kudos at the end of her run. 4. Maddie Snowdon is presented with $146,500 Gamal El-Din on HDSA’s YouTube channel. congratulatory flowers.5. Laura Rouse shows her winning form. This Week In HD Research RAISED FOR HDSA HDSA’s Dr. Leora Fox keeps you up to date each week with the This Week In HD Research blog. HDSA Social Media 2 3 Get the latest in Get the latest news by following HDSA’s social media channels! HD research • Facebook: facebook.com/HDSofA news by visiting • Twitter: twitter.com/HDSA 1 HDSA.org/blog • Instagram: instagram.com/HDSAnational/ • YouTube: hdsa.org/youtube Dr. Leora Fox, HDSA Assistant Director, • LinkedIn: linkedin.com/company/huntington’s-disease-society-of-america/ Research and Patient 4 5 Engagement

10 11 UPPER MIDWEST REGION GREAT LAKES REGION NEW YORK / NEW JERSEY REGION NEW ENGLAND REGION 2020 REGIONAL (North Dakota, South Dakota, (Wisconsin, Michigan, Illinois, (New York, New Jersey) (Vermont, New Hampshire, Maine, Nebraska, Minnesota, Iowa) Indiana, Ohio, Missouri, Kentucky) NYC Team Hope Walk Massachusetts, Rhode Island, Connecticut) South Dakota Team Hope Walk Naperville Team Hope Walk NYC Chapter Celebration of Hope — James Bond Style EVENT HIGHLIGHTS South Dakota Chapter Illinois Chapter $104,600 New England Region $22,500 $115,450 New Jersey $61,212 Cruisin’ for a Cure Chicago Team Hope Walk Tewksbury Iowa Chapter Celebration of Hope NJ Chapter Team Hope Walk Every year, HDSA’s 50+ $16,598 Great Lakes Region $39,122 MA/RI Chapter PACIFIC REGION $72,672 $44,747 Chapters and Affiliates (Washington, Oregon. California, Montana, Minneapolis Fishy Frolic Idaho, Wyoming, Nevada, Utah, Arizona) Team Hope Walk Liberty Albany Chapter Maine host more than 300 events Minnesota Chapter Team Hope Walk $24,891 Team Hope Walk San Diego Team Hope $15,937 Great Lakes Region Maine Affiliate across the country thanks Scavenger Hunt $38,000 $25,779 San Diego Chapter to the amazing leadership $62,136 of HD families and Los Angeles Team Hope Walk volunteers. Here are just Los Angeles Chapter $40,000 MID-ATLANTIC REGION a few! (District of Columbia, Delaware, Maryland, Western Washington Virginia, West Virginia, Pennsylvania Team Hope Walk Washington Chapter Woods Warrior $32,180 Western PA Chapter $10,377 Fast Track Western PA Chapter $7,163 SOUTH CENTRAL REGION SOUTHEAST REGION (Colorado, Kansas, New Mexico, Oklahoma, (Tennessee, Alabama, North Carolina, Erie Texas, Arkansas, Louisiana, Mississippi) South Carolina, Georgia, Florida) Team Hope Walk Mid-Atlantic Region The Great Texas South Florida Triathlon $4,839 Team Hope Walk South Florida Chapter South Central Region $51,685 Special thanks to our National $37,581 Atlanta th Team Hope Sponsors 16 Annual Hero’s vs. Team Hope Walk Villains Virtual Run & Walk Georgia Chapter Rocky Mountain Chapter $29,837 $26,747 South Carolina th 6 Annual Fairways Team Hope Walk for Hope Golf Event Southeast Region Rocky Mountain Chapter $6,718 $11, 292

12 13 CONVENTION

Virtual 35th Annual HDSA Convention

Due to the COVID-19 pandemic, the Huntington’s The Welcome Reception on Thursday included normally seen at an HDSA Convention. Dr. Ed Wild On Saturday, HDSA’s Chief Scientific and On the fourth and final day of the Virtual Convention, Thank you to our generous sponsors that made Disease Society of America transitioned the 35th a virtual concert featuring performances by and Dr. Jeff Carroll from HDBuzz.net delivered Mission Officer, Dr. George Yohrling hosted the more sessions and support groups were conducted the 35th Annual HDSA Convention possible! Annual HDSA Convention, Marc Scibilia, The Mammals and Dave Hause. yet another entertaining and very informative Research Forum which included updates from with incredible attendance numbers. The Virtual th which was scheduled to be Marc Scibilia paid tribute to the 80 Anniversary “Ask the Scientists Anything” session. The virtual Annexon Biosciences, Wave Life Sciences, Convention Closing Ceremony program on Sunday PRESENTING PRESENTING GOLD NONPROFIT in New Orleans, into a virtual of Woody Guthrie’s “This Land Is Your Land” with workshop was so successful that HDSA and Roche/Genentech, HDBuzz and a Clinical Trials night revealed that Spokane, Washington will be SPONSOR SPONSOR SPONSOR event on June 4-7, 2020. his beautiful acoustic rendition of the iconic song. HDBuzz will produce more throughout the year Showcase featuring CHDI Foundation, uniQure, the site for the 36th Annual HDSA Convention In addition to overcoming on a regular basis. Friday night was capped off Triplet Therapeutics and Neurocrine Biosciences. location in 2021. On Friday, the education and support sessions the challenges of the pandemic, the unique virtual with the NYA Talent Show hosted by Jennifer began and included all the popular presenters The culminating event was the presentation of event allowed guests who might not otherwise been Simpson, LCSW and Katie Moser. HDSA’s National Awards to HDSA South Carolina able to travel to New Orleans due to health and SILVER BRONZE BRONZE Affiliate (Affiliate of the Year), Autumn Furnisen expense to opportunity to attend sessions. SPONSOR SPONSOR SPONSOR (Youth/JHD Award), Massachusetts & Rhode Island HDSA scheduled forty sessions over the four-day Chapter (Chapter of the Year) and Jennifer Brown Virtual Convention, and the HD Community came (Person of the Year). Marjorie & Woody Guthrie’s out in full force. More than 1,500 unique email daughter, Nora Guthrie made a surprise registrants joined the Convention, and on average, appearance to present Bill Kline with the Woody days of online presentations BRONZE BRONZE BRONZE there were 345 viewers per session. Impressively, Guthrie Award and Jack Griffinwith the Marjorie SPONSOR SPONSOR SPONSOR participants from 93 nations around the world sessions Guthrie Award. The Closing Ceremony concluded participated in the global online experience. with the emotional Candle Lighting Ceremony nations represented where HDSA recognized the entire HD Community “Honestly, it never occurred to us not to hold and then a fun-filled virtual dance party. Convention this year,” said Louise Vetter, viewers per session on average HDSA’s President & Chief Executive Officer. Throughout the four-day Virtual Convention FRIEND FRIEND FRIEND viewed the HDBuzz presentation — SPONSOR SPONSOR SPONSOR “When COVID-19 made New Orleans travel the Convention’s most attended session attendees had the opportunity to connect on impossible, our focus shifted to creating a virtual the HDSA Convention app, as well as visit the Convention app downloads event that included world-class presentations Virtual Exhibit Hall. without losing the extraordinary connection and unique email registrants Thank you to everyone who emotion which the HDSA Convention is known attended and supported the for each year.” unique visitors to the Virtual Exhibit Hall Virtual 35th Annual HDSA HDSA SP 36TH ANNUAL live views CONVENTION 2021 The Virtual Convention featured nearly all of the Convention! We look forward JUNE 10-12 regularly scheduled Convention programming with to seeing you in Spokane, To view all recorded Convention sessions, some surprise special guests. Washington next year on June 10-12, 2021! please visit HDSA.org/convention

14 15 Anne Leserman Retires From HDSA Here’s The Deal After 17 years of tireless work on behalf of HD HDSA’s Here’s The Deal, is a web families while at HDSA and the HDSA Center series hosted by Jennifer Simpson, of Excellence at the University of Iowa, HDSA’s LCSW that features in-depth Assistant Director of Community Services, conversations on important Anne Leserman, retired on September 3, 2020. HD topics to assist viewers in dealing with the many Anne joined HDSA in aspects of HD. Patrick Warburton Brandi Rhodes Brett Scallions 2012 as Manager of Community Services and Watch Here’s the Deal at Mid-Atlantic Regional HDSA.org/heresthedeal Social Workers. Jennifer Simpson (at left) with Most recently, as the guest, HDSA National Youth Assistant Director of Alliance Board member Gia Community Services, Mannone, on HDSA’s web Anne had the critical series, Here’s the Deal. mission of managing the Social Worker and Support Group network nation- wide. This involved managing 70 social workers at HDSA Centers of Excellence locations, Chapters and Affiliates as well as advising more than 150 Support Groups. Anne also provided counseling and resources for HD professionals and families overseeing HDSA’s national helpline and professional training HDSA & Me Webinar Series programs. She also spearheaded HDSA’s free Educate. Engage. Empower. telehealth service in partnership with AmWell. HDSA & Me is a virtual educational series for the HD community May: Huntington’s Disease Awareness Month In honor of her dedication to the Huntington’s which features experts presenting a wide range of HD-related disease community, Anne was recognized with the HDSA kicked off Huntington’s Disease Awareness Month in May with a Supporters from across the globe came together to recognize HD Awareness topics. The series aims to educate, engage, and empower those Patient and Family Service Award at HDSA’s Virtual Team Hope Walk event. During HD Awareness Month, several celebri- Month. On May 15th, HDSA collaborated with multiple international HD who are affected by HD or wish to learn more. Annual Convention in 2011. ties, athletes, musicians and influencers used their platforms to raise much- organizations to celebrate International HD Awareness Day. needed awareness by participating in the #LetsTalkAboutHD campaign. Some Anne intends to spend more time in Seattle, You can view the virtual educational series ‘HDSA & Me’ The #LetsTalkAboutHD videos can be seen on HDSA’s YouTube Channel notable new supporters included stars of All Elite Wrestling (AEW) including Washington with her family and new puppy, Gracie. at HDSA.org/hdsa-me at HDSA.org/youtube. Brandi Rhodes, AEW’s Chief Brand Officer; actorPatrick Warburton (Seinfeld, Her colleagues at the national HDSA office will miss Family Guy); rock musician Brett Scallions and many more. her sage advice, sarcastic wit and wonderful baking.

16 17 RESEARCH ADVOCACY BY GEORGE YOHRLING, Ph.D. BY JENNIFER SIMPSON, LCSW

The COVID-19 pandemic has affected all aspects of with the goal of understanding and ultimately 2020 was a year full of hectic disruptions in Senator Chuck Grassley, Senator Tim Scott and HD Parity Act is, how crucial immediate care is our society, and the HD research community was preventing CAG repeat expansion, and Azevan government and governmental processes, but also Senator Todd Young, engaging members and for our community, and how important their support not immune to the consequences of this virus. HD reported clinical trial data suggesting that their amazing opportunities. HDSA joined in with our reminding them of their duty to our community is for their constituents. laboratory research and clinical trials were delayed drug SRX-246 may improve irritability and partners in the healthcare space to advocate for the to make sure that legislation important to the We will never stop fighting and finding ways to to curb the spread of the virus, but the HD community aggression in HD patients. inclusion of expanded FMLA benefits for caregivers community is considered and passed. And we are have our small but mighty community be heard. did what it always does… adapt and persevere. We of high-risk individuals during the COVID-19 crisis. ready and raring to enter a new year, new congress While 2020 will undoubtedly go down in history We know we can pass this bill, we’ve seen it happen came together quickly to reimagine our New Orleans and new administration with a singular goal in as one of the most challenging years ever, it will HDSA was committed to keeping our community in 2020 for our partners in the ALS community with Convention as a virtual event that safely reached mind… to pass the HD Parity Act. also be remembered as a year of unprecedented informed of the impacts and risks of COVID-19 for a second waiver of the 5-month waiting period for more than 1,500 people in over 90 countries. It expansion of our HD drug pipeline, based on solid HD families, providing resources like HDSA’s video The changes in Congress and the administration monetary SSDI benefits. was here that families got firsthand updates from science from observations in humans. While we series Here’s the Deal that featured interviews with present a new and promising opportunity for our scientists and clinicians from around the globe on Now, it’s our turn. anxiously await results from the current huntingtin Dr. Arik Johnson and Dr. Victor Sung, infographics voices to be heard — even virtually. our collective progress since we last met in Boston. lowering trials like Roche’s Generation-HD1 and on COVID-19 relief packages and how the HD Learn more at HDSA.org/takeaction Despite the setbacks 2020 presented, this year Each month we will be setting up virtual meetings Wave’s Precision-HD1/2, there is more excitement community can benefit, among other important marked several notable events in the history of with community members, our COE neurologists and hope than ever due to the depth and diversity HD topics. HD research. and our HDSA advocacy team in order to best of our clinical trial bench. JENNIFER SIMPSON, LCSW is HDSA’s We also pushed for the HD Parity Act during explain what and why the HD Parity Act is so uniQure dosed the very first US patients with an Assistant Director of Youth & Community Services Here’s to a safe and happier 2021 with continued the pandemic, setting up virtual meetings with important. We will have virtual “fly-ins” and make experimental HD gene therapy that could perma- [email protected] progress towards a world free of HD! community members and their Senators, including sure all members of Congress know what the nently reduce harmful huntingtin protein with just one dose. Novartis announced plans to test an

orally administered drug to lower huntingtin, and GEORGE YOHRLING, Ph.D. is HDSA’s PTC Therapeutics is traveling a similar path. Chief Scientific Officer and Chief Mission Officer Triplet Therapeutics fully recruited SHIELD-HD [email protected] HDSA MISSION REPORTS

Senator Chuck Grassley (R-IA) Senator Tim Scott (R-SC) Senator Todd Young (R-IN)

HDSA set up virtual meetings with Senators Chuck Grassley, Tim Scott and Todd Young to discuss the importance of passing the HD Parity Act. (AT RIGHT) Dr. Victor Sung and Dr. Arik Johnson join Jennifer Simpson to discuss COVID-19’s impact on the HD community on an episode of Here’s the Deal in April.

18 19 EDUCATION YOUTH PROGRAMS BY DEBRA LOVECKY, MS BY JENNIFER SIMPSON, LCSW

Hindsight is 2020 and thus when we look back on In like manner, our Chapters, Affiliates, support HDSA, in partnership with the National Society After seeing the success 2019’s Youth Social The challenges of 2020 did not stop our NYA support, connections, and resources for our young this extraordinary year through the lens of time, groups and HDSA Centers of Excellence quickly of Genetic Counselors (NSGC), launched a new Worker Pilot Program, two more social workers members from spreading awareness, and sharing people in the community. it will be as important to remember all that we re-grouped and, by the latter half of 2020, had continuing education program in April on the joined the team in order to better provide additional their stories on all different platforms whenever Learn more at HDSA.org/NYA accomplished in the midst of unprecedented times begun to offer virtual educational events. As we NSGC website. This new three year CE course resources for youth in the community in 2020. they could. There is no stopping this community as it is to lament the losses we experienced. end the year, HDSA will have presented diverse offers genetic counselors across the United States In the midst of planning 2020 events for HDSA’s and we will continue to grow stronger, together. While the largest educational event HDSA holds educational programming through seven in-per- the opportunity to learn more about the unique National Youth Alliance (NYA) members, the Although great things have happened virtually, we JENNIFER SIMPSON, LCSW is HDSA’s each year, the HDSA Convention, evolved into a son, pre-pandemic events and 29 virtual education issues surrounding both presymptomatic and COVID pandemic hit the world — bringing Assistant Director of Youth & Community Services hope and can’t wait to see everyone in person again! virtual educational and family gathering, it in no events for a total of 36 unique offerings. Compared symptomatic genetic testing for Huntington’s challenges and experiences, none of us could have [email protected] 2021 will be filled with more amazing experiences, way paled to any preceding in-person Convention. with 2019, when HDSA hosted 59 educational days, disease while earning free CE units. From April planned for. The pandemic turned all in-person this is a true testament to the dedication and through the end of November the course attracted events into virtual online experiences, that found commitment of our volunteers and leadership who more than 900 users with more than 400 CE units new, inventive ways to provide young people

Huntington’s Disease worked very hard to provide not only compelling awarded to genetic counselors who successfully support, resources, a sense of belonging, and a Society of America programming for our families but also a sense of completed all five modules in the course. place for them to meet others affected by HD/JHD. connection during these challenging times. HDSA also relaunched its joint course with the Despite not being able to see one another in person, HDSA HDSA also launched HDSA & Me, a new hour-long American Occupational Therapy Association we were able to reach more people during HDSA’s family focused web series that continued our (AOTA) for occupational therapy providers. Virtual Convention, with record numbers of people & Me educational initiatives. HDSA & Me began in April During the first six months, AOTA awarded logging in to see, learn, and find support. A new virtual as a weekly series of activities and speakers that 435 CE hours to occupational therapists. educational series for As we saw our youth needing more content, and addressed issues of isolation, caregiver stress, and the HD community Even as 2020 challenged the way that HDSA less screen time, we created NYA Virtual Miniseries limited outside engagement by bringing armchair offered education to our families and our health- focusing on different important topics every other yoga, dance, exercise, music and inspirational Educate. care professionals, the Society responded by Saturday for 1-2 hours led by our youth social work- speakers to HD families across the country. After a Engage. expanding its use of online tools in order to ers and NYA board members. As they continue to three month summer hiatus, HDSA & Me returned in provide both live and recorded content for our be successful, we will continue to develop more top- Empower. September with a roster of speakers from our HDSA many stakeholder groups. ics and ways to keep young people connected and Center of Excellence program that focused on provide online resources until we are able to safely strategies for caregivers and persons with HD to host our NYA Youth Retreats again. maximize the increased use of telehealth services. DEBRA LOVECKY, MS is HDSA’s In the area of professional education, HDSA Director of Educational Programs. recognized the increased need for more HD [email protected] knowledgeable genetic counselors as disease In 2020, the NYA received a makeover with a new logo as To view HDSA & Me visit HDSA.org/hdsa-me modifying therapies near approval. this inspiring group continued their mission to improve the lives of young people affected by HD and their families.

20 21 SUPPORT & SERVICES DISABILITY PROGRAMS BY JENNIFER SIMPSON, LCSW BY ALLISON BARTLETT, ESQ.

2020 saw a giant leave our community. Jennifer Simpson stepped into the role of regional social workers, with the onboarding of Ask Allison! for families and social workers this year to help with If you have questions about Social Security Anne Leserman, our Assistant Director of Assistant Director of Youth & Community Services, social workers into new positions including Eastern the Social Security disability application process disability or general disability topics, Families and many professionals ask HDSA’s disability Community Services, retired after many years and brought on MaryAnn Emerick as the Manager Washington state and other areas where chapters including a Social Worker Disability Starter Kit, please contact Allison Bartlett, Esq. at expert Allison Bartlett questions about the disability of dedicated service to the HD Community. of Youth & Community Services to assist in the and affiliates had worked hard to make these Social Security process infographic, disability onset (212) 242-1968, ext. 218 or [email protected]. process, health insurance, private disability, legal (See story on page 17). Although we were heart- management of the youth, advocacy and social supports available to their communities. HDSA date worksheet, question guide to help determine planning, and locating disability resources in their Learn more at HDSA.org/disability. broken to see Anne leave us, we wish her well work programs. grew our online telehealth program, seeing HD symptoms and limitations, HD medical source community. We even added the ‘Ask Allison!’ in her retirement and many years of happiness increases in usage throughout 2020 of our statement, disability and legal resource preparation HDSA maintained a roster of 25 chapter and section to the website to easily contact her. with her husband, children and dog Gracie. AmWell counseling program as well as growth checklists, and a disability appeal guide for completing ALLISON BARTLETT, ESQ is HDSA’s 2020 has been a busy year for the HDSA disability Manager of Disability Programs. of national online support groups. We expanded the online Social Security disability appeal. program thanks to all of your questions. We have [email protected] our online support group offerings to include groups provided disability assistance, resources, and for young adults, family planning and beginning consultations to more than 1000 requests from your HD journey. social workers and families via phone and email, HDSA also began a process of reviewing our more than double from 2019! nation-wide support group program, with the goal While travel was not an option this year, Allison of providing additional support and structure to our was able to present at HDSA’s Virtual Convention group leaders in 2021. We are thrilled to see our and she spoke at numerous virtual education days support networks growing across the country, and virtual support groups across the country, especially during a pandemic when folks have which has been a great resource for families — she needed help more than ever, and look forward to is available to speak at virtual events in 2021. For seeing them grow even more in 2021. weekly disability updates, check out the Disability Learn more at HDSA.org/support Tip of the Week on Facebook, Instagram, or Twitter, that was started in February 2020.

JENNIFER SIMPSON, LCSW is HDSA’s The Disability Chat Webinar Series is still going Assistant Director of Youth & Community Services strong and webinars are hosted every other month, [email protected] this year’s topics included starting the disability process, disability myths, completing disability forms, and the legal and disability considerations for prodromal and early to mid-stage HD. To date, Disability Chat has had 422 live views and 1,400 recorded views. Several new resources were created HDSA expanded online support group offerings to To assist with the disability application process, a include groups for young adults, and family planning. Social Worker Disability Starter Kit has been developed.

22 23 20 2 1 BOARD OF TRUSTEES STAFF LEADERSHIP Victor Sung, M.D. Louise Vetter Chair President and Teresa Srajer Chief Executive Officer Chair Elect Rosemary Coluccio MISSION E.J. Garner Chief Operating Officer To Improve the Lives of Everyone Affected Past Chair Christopher Cosentino by Huntington’s Disease and Their Families. Kamran Alam Director of Marketing Treasurer and Communications Jamison Skala VISION Jenne Coler-Dark Secretary Director of Development Save A World Free of Huntington’s Disease. Angela Allen George Yohrling, Ph.D. Chief Scientific Officer and HDSA SP the Dan Brennan Chief Mission Officer 36TH ANNUAL Mark Coe CONVENTION Stacy Coen 2021 Dates! Wendy Erler JUNE 10-12 Dr. Erin Furr Stimming Jay Hughes Jonathan Klein, Esq. Kelsey Porter Dom Thomas PLEASE NOTE: Our ability to host the Leslie Thompson, Ph.D. 36th Annual HDSA Convention in Spokane Vicki Wheelock, M.D. is dependent on federal, state and local public health guidelines. Please check www.HDSA.org regularly for updated information. Thank You!

24 HUNTINGTON’S DISEASE SOCIETY OF AMERICA HDSA’S FAMILY OF SERVICES

505 Eighth Avenue Get the help you need from the comfort Suite 902 and safety of your home at no cost. New York, NY 10018 n National Helpline: (800)-345-HDSA (4372) (212) 242-1968 n Online Support Groups: HDSA.org/osg www.HDSA.org n Telehealth: HDSA.org/telehealth

n Disability Services: HDSA.org/disability

n Clinical Trial Participation: HDtrialfinder.org

n Locate Resources Near You: HDSA.org/locateresources

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