Table Of ContentDear Friends of HDSA,
Are we where we want to be? NOT YET. Are we getting closer? YES! With more hands on deck, we are able
Putting all the great advancements in research aside, it is important to improve our tremendous support
to be reminded that there are still thousands of families impacted programs even more, such as
by Huntington’s disease that are in dire need of support right now. HDSA’s telehealth program, online
Although we are excited to report on promising research news — support groups, HD Trialfinder and
TABLE OF CONTENTS
there is still no treatment for HD and our work is not done. In 2019 helpline — All free. All the time.
we worked hard to expand these services to provide world-class
HDSA is on the forefront of
PRESIDENT & CEO MESSAGE 1 support to families from coast to coast. supporting promising HD research.
This year we expanded our Centers of Excellence program to 47 In 2019, we funded more HD science
2019 HIGHLIGHTS 2
facilities and 6 clinical sites across America where more families than ever before including more than
can receive expert care. With new Centers in California, Illinois, $1.4 million in direct grants to scientists. We also
2019 REGIONAL EVENT HIGHLIGHTS 14
New York and North Dakota, HDSA now offers care locations in 31 continued to cultivate strong relationships with leading
States plus the District of Columbia. This year, HDSA awarded a total bio-pharmaceutical partners.
RESEARCH FUNDING PROGRAMS 16
of $1.4 million to the Centers of Excellence program, an almost eleven
As our founder Marjorie Guthrie said, “We must continue to
2019 MISSION REPORTS 20 percent increase in funding from 2018. search for HD families everywhere.” Through strategic outreach and
Research 22 The Huntington’s Disease Society of America also added new staff engagement efforts, HDSA has generated more awareness than ever
Advocacy 23 positions to play integral roles in supporting HD families. In June, before. We are getting more influencers involved who are using their
we welcomed Allison Bartlett, Esq. to serve as HDSA’s Manager of platforms to bring HD families together and let them know how to
Education 24
Disability Programs. Allison has been able to assist countless families find the help they need.
Youth Programs Report 25
through the complex disability process as well as host Disability Chats
Once again, our work is not done, but because of you we are able
Support & Services Report 26
to provide valuable insight into social security and what is needed for
to let HD know — we are never giving up this fight until we are in
Disability Programs Report 27
approval.
a world free of Huntington’s disease.
We know youth are a powerful voice in the fight against HD.
35TH ANNUAL HDSA CONVENTION 28
Young adults and children from HD families continue to be wonderful
Sincerely,
MISSION & VISION STATEMENTS Inside Back Cover advocates and their passion is never overlooked. However, we knew
we needed to create more support programs for youth impacted by
BOARD OF TRUSTEES Inside Back Cover HD which is why we welcomed, not one, but two youth social workers
to the HDSA team. Thanks to the Griffin Foundation, Katie Dykman,
STAFF LEADERSHIP Inside Back Cover LISW and Jessica Marsolek, LGSW are professionals trained to serve Louise Vetter
President & Chief Executive Officer
young people and respond to the unique needs of children, teens and
young adults impacted by HD.
1
2019 Highlights
HDSA CENTERS OF EXCELLENCE GROW TO 47 SITES ACROSS THE U.S. HDSA AWARDS INAUGURAL CLINICAL RESEARCH PILOT GRANTS TO FOUR CENTERS OF EXCELLENCE
In 2019 HDSA announced that forty-seven out- In December, HDSA awarded four grants under an opportunity for HDSA Center of Excellence Applications for this grant mechanism were open
standing Huntington’s disease care facilities with a new research initiative, the HDSA Center of directors and staff to get a new research ideas to all 47 HDSA Centers of Excellence and their six
six satellite sites were awarded the designation of Excellence Clinical Research Pilot Program. off the ground. partner sites. Ultimately, grants were awarded to
HDSA Centers of Excellence. These grants, totaling $50,000, represent HDSA’s four research teams on the following projects:
“I am excited about this year’s recipients because
patient-centric research focus by fostering novel
This was an increase from 43 in 2018, and from just their innovative proposals could positively impact HDSA Center of Excellence Partner Site at Oregon
clinical research projects within the HDSA Center
20 in 2015. The four new 2019 Centers of Excellence the way HD care and counseling are delivered, how Health & Science University, Dr. Amie Hiller
of Excellence network.
are: OSF HealthCare Illinois Neurological Institute symptoms are treated and how disease progression Measuring Cortisol Levels in Persons
(Peoria IL), Sanford Health, (Fargo, North Dakota), These pilot projects will unite scientists with is monitored,” said George Yohrling, PhD, Chief with Huntington’s Disease
University of Buffalo (New York) and University of patients through the direct participation of HD Scientific Officer and Chief Mission Officer
HDSA Center of Excellence at Rush University
California, Irvine. The HDSA Centers of Excellence OSF HealthCare Illinois Sanford Health, families in clinical research. The funding provides at HDSA.
Medical Center, Dr. Deborah Hall
are multi-disciplinary care teams with expertise in Neurological Institute (Peoria, Illinois) (Fargo, North Dakota)
Optimization of Tele-Genetic Counseling
Huntington’s disease that share an exemplary
for Huntington’s Disease
commitment to bringing comprehensive care.
HDSA Center of Excellence at University of Texas
The strategic expansion of the Center of Excellence
Health Science Center, Dr. Erin Furr-Stimming
program allows HDSA to increase access to expert
Melatonin for HD Gene Carriers with HD Related
HD clinical care and clinical trial opportunities to
Sleep Disturbance
more families across the United States. With new
Centers in California, Illinois, New York and HDSA Center of Excellence at the University
North Dakota, HDSA now offers care locations of Virginia, Dr. Madaline Harrison
in 31 states plus the District Training in Primary Palliative Care for Huntington’s Disease
of Columbia. This year,
HDCARE Clinic, Gottschalk Medical Plaza, UBMD Neurology, “Our HDSA Centers of Excellence are at the
HDSA awarded a total of
University of California, Irvine University of Buffalo (New York) epicenter in the search for better HD care and
$1,418,684 to the Centers
treatments. HDSA is pleased to support these pilot
of Excellence program, “HDSA is deeply committed to helping families team approach to Huntington’s disease care and
programs in the confidence that our investment
an almost eleven percent affected by Huntington’s disease have access to research. Patients benefit from expert neurologists,
today will provide a brighter future for all HD
increase in funding from experienced and family-focused care,” said Louise psychiatrists, social workers, therapists, counselors
families.” said Louise Vetter, HDSA’s President
last year. Vetter, HDSA’s President & Chief Executive Officer. and other professionals who have extensive expe-
and Chief Executive Officer.
“The recognition of new Centers of Excellence means rience working with families affected by HD and
that more families will benefit from comprehensive who work collaboratively to help families plan the
care and the life-changing treatment and research best HD care program throughout the course of the
opportunities that drive us forward towards finding disease. Applications to become an HDSA Center of
a cure for this disease.” Excellence are open to all clinics in the United States
who share HDSA’s commitment to high-quality,
The HDSA Centers of Excellence provide an expert
comprehensive care and access to clinical research.
2 3
7 8
6
MORE THAN
THE STARS SHINE AT FREEZE HD GALA
On Saturday, September 28th, four hundred guests $10,000 to support this wonderful night! gaming equipment and so much more! Freeze HD $420,000 Special Thanks To Our
attended the 5th Annual Freeze HD at Avalon was supported by a wonderful event committee
“The 5th Annual Freeze HD was the largest Freeze HD Gala Sponsors
Hollywood where more than $420,000 was raised fundraising event ever hosted to support our that included Rachel McAdams, Jason Ritter, WAS RAISED
9 10
to support HDSA’s fight against Huntington’s Jaime King, Marianna Palka, Simon Helberg, Bryce
organization and we couldn’t have done it without GOLD SPONSORS
disease. This star-studded event was hosted by Dallas Howard, Kenneth and Diane Mayfield, AT THE 5TH
our incredible honorees, Scott and Kelsey Porter, • Genentech
actor Lamorne Morris and honored Kelsey and Blake and Jenne Coler-Dark, Brian Logan Dales,
sponsors, event committee and everyone who A N N U A L • The Ferrell-Paulin
Scott Porter. Some notable guests included Seth Matt and Courtney Hamilton, Jamie Linden, Justin
attended as well as bid on the amazing auction Family Foundation
Green, Topher Grace, Jason Ritter, Katherine and Kate Miner, Elliott and Tracy Owen, Carly
items,” said Louise Vetter, HDSA’s President and FREEZE HD
McNamara, Marianna Palka, Kate Miner, Rachel Ritter, Nancy Morgan Ritter, Tyler and Lelia Ritter,
Chief Executive Officer. “Thank you everyone — 14 SILVER SPONSORS
Bilson, Wilson Bethel, Jaime King and Jason Ziven, Angelique Cabral, Jaylen Moore and GALA
this was truly a showcase of the extraordinary 15 • Bel Air Internet
Allie LaForce. The event featured incredible live strength of the HD community.” Britt Logan, Gentille Koosed, Kyle Newman, Adam 13 • Cambium Networks
performances from Brian Logan Dales and The Seid, Jessica Cain, Emily and Jamie Rodgers and
The incredible auction included exciting trips, • Keyes Real Estate
Dales Hotel, Tyson Ritter from The All-American Alana Yankowitz.
signed TV/movie & sports memorabilia, 11 • Marron Foods
Rejects, DJ Skee, DJ Prophet, Emma Hutton, Leslie
once-in-a-lifetime experiences, exclusive tickets, 12 • Wave Life Sciences
Powell and Scott Porter. Actor Will Ferrell donated
• Winncom Technologies
BRONZE SPONSORS
• After Hours Theatre Company
• Amberlee Colson
• California Horizon Pool & Spa
16
• Educated Nannies
• Fake Empire
• Ferrandino & Son, Inc.
• Freemark Financial LLP
• Robert Kirkman
• Rumble Riot Pictures
18 • Temple Hill Entertainment
17 • The MBS Group
1 2 3 4 5
• The O.C.D. Experience
• Wilson Bethel
• William Morris Endeavor
1. Will Ferrell 2. Ashley Hinshaw and Topher Grace 3. Freeze HD Introduction 4. Jason Ritter 5. Scott Porter, Jaime King, Rachel Bilson and Wilson Bethel share a playful moment 6. Kate Miner and
Briana Lane 7. Todd Grinnell 8. Jaylen Moore strikes a pose 9. Marianna Palka and Kate Miner share a laugh 10. Tyson Ritter 11. HDSA President & C.E.O., Louise Vetter with Freeze HD Gala
honorees, Scott and Kelsey Porter 12. Freeze HD Gala host, Lamorne Morris 13. Jaime King 14. Rachel Bilson 15. Katherine McNamara 16. Seth Green and Clare Grant 17. Brian Logan Dales
performs 18. Rachel McAdams 19. Freeze HD Gala honorees, Scott and Kelsey Porter address the guests
19
4 5
HDSA FILMS DEBUT ‘ALL IN TO END HD’ STARTING A FAMILY AMID HD CONCERNS
CASINO NIGHT WITH GUILLERMO GILLETTE TREOTM RECEIVES POSITIVE DISCUSSED ON NBC’S THE TODAY SHOW
In 2019, HDSA produced three powerful short films
— Carol & Richard: A Love Story, The Hodgsons, The ‘All In To End HD’ Casino Night took place REVIEWS FROM HD FAMILIES HD facts and statistics provided by HDSA were
and The Vaughns. All were directed by Rae Maxwell. on Saturday, June 1 at the Continental Club in featured on The Today Show in February when our
The films are featured on HDSA’s YouTube Channel downtown Los Angeles. The evening featured This year, HDSA partnered with Gillette dear friends, TNT basketball reporter Allie LaForce and
and each has received thousands of views. a speakeasy venue setting, live music from jazz to test a new product with HD caregivers. husband Joe Smith of the Houston Astros appeared for
The Gillette TREO™ razor features a built-in
singer Andrea Miller, various gaming tables and an exclusive interview. The couple shared their concerns
At right, a scene from The Hodgsons, produced by shave gel and is the first razor specifically
an appearance from emcee Guillermo from Jimmy about starting a family since Joe’s mother suffers from
HDSA Films.
designed to shave someone else. Designed
Kimmel Live! The event successfully brought in 125 HD. Dr. Erin E. Furr-Stimming, a neurologist from the
HDSA Films
with caregivers, for caregivers, TREO has a
guests and raised $35,000 for our HD community University of Texas HDSA Center of Excellence, whose
safety comb that NBC Universal
— all while engaging new committee members, team was recently awarded a Clinical Research
TNT’s Allie LaForce and the Houston Astros’ Joe Smith
‘HERE’S THE DEAL’ VIDEO SERIES SEPTEMBER 18: potential sponsors and local influencers for next year. helps protect the Pilot Grant by HDSA, also appeared. appeared on NBC’s The Today Show.
skin and prevent
HDSA’S FOUNDER’S DAY OF GIVING
HDSA’s Jennifer Simpson, LCSW continues
clogging, an
to host Here’s The Deal, an online video On September 18th, HDSA ergonomic handle
series that features insightful launched The Founder’s Day for great comfort COMEDIAN ROD MAN HOSTS HD
conversations with members of the of Giving to pay tribute to and control, and a FUNDRAISER — ‘MAIN STREET LIVE’
HD community. This past year’s our founder, Marjorie special non-foaming Comedian Rod Man who comes from an HD family,
topics included Isolation, Family Guthrie. It was on on gel that hydrates hosted his annual talent show — Main Street Live —
Planning, Caregiving While Positive September 18, 1967 our the hair with no in Georgia to raise funds and awareness for HD.
and Parenting a Child With JHD. organization was founded. water required. Rod has appeared on NBC’s
Visit HDSA’s YouTube Channel to watch In just its first year,
Last Comic Standing.
HDSA looks
the entire Here’s The Deal series. Founder’s Day of Giving
This year his charitable
to continue this
raised more than
Charlotte Reicks (left) and Marie Nemec event raised more
great partnership
$10,000 to support
than $3,000 to support
to bring useful
the first-time attendee HDSA Jazz singer Andrea Miller ‘BIKE FOR THE CURE’ FEATURED HDSA’s mission.
products to
Convention Scholarship Program. Thank you! and Guillermo Rodriguez IN BICYCLING MAGAZINE
HD families.
from ABC’s Jimmy Kimmel
Live! You can learn After 20 years and 20,000 miles, Bike for the Cure was Comedian,
Rod Man
more about the featured in Bicycling magazine. Over the past 20 years,
Gillette TREO Charlotte Reicks age 83, and Marie Nemec, 74, rode
CELEBRITIES RAISE HD AWARENESS and Rachel Nichols are among many more razor by visiting more than 20,000 miles for Huntington’s Disease
celebrities who continue to generate much-needed Gillette.com/ Society of America. They crossed 48 of the 50 con-
Seth Green, Jason Ritter, Marianna Palka, Kate HD awareness through #LetsTalkAboutHD TREO. tiguous states, connecting people and communities
Miner, Jaime King & Rachel Bilson, Nyambi public service announcements. while growing their mailing list — their main source
Nyambi, Wilson Bethel, Scott Michael Campbell
of donations. As of December, 2019 they have raised
over $743,000 to fight HD!
6 7
HDSA’S 34TH ANNUAL CONVENTION IN BOSTON SETS ATTENDANCE RECORD
The 34th Annual Huntington’s Disease Society of affected by Huntington’s disease,” said Louise Boston, which led to the carnival-themed Welcome The education tracks were jam-packed with As is tradition, the Convention closed with the The 34th Annual HDSA Convention
America (HDSA) Convention was held in Boston, Vetter, HDSA’s President and CEO. “With the Reception. During the Opening Ceremony on Friday workshops from world-class speakers, including emotional candle lighting ceremony paying tribute to was made possible by the generous
Massachusetts on June 27th-29th at the Boston incredible advancements in HD research and care, morning, Dr. Jang-Ho Cha, Dr. Marcy McDonald Nobel Laureate Dr. Craig Mello who delivered the the entire HD community. support of all its sponsors:
Marriott Copley Place. With 1,225 guests, the HD families are engaged and invigorated to go out and Cheryl Sullivan-Stavely led a moving panel Keynote Address during Saturday’s Research
PRESENTING SPONSOR
Convention set a new attendance record breaking and do something. We could not put an event discussing the dynamic relationship between Forum. Also during the Research Forum, Dr. Ed
• Genentech
the previous record (1,046) in Los Angeles, of this magnitude together without the help of research and HD families. Wild and Dr. Jeff Carroll from HDBuzz gave an
• Teva Pharmaceuticals
California held last year. The 35th Annual HDSA our amazing sponsors who we are grateful to in-depth and entertaining update on HD research
Friday afternoon featured the Cheers-themed
Convention will be held in New Orleans, Louisiana call our friends in the fight against HD.” and promising clinical trials entitled “HD Avengers
VolunCheer Luncheon where the Society cheered PLATINUM SPONSOR
on June 4th-6th, 2020. — Endgame?”.
The festivities kicked-off on Thursday with the the extraordinary efforts of the HDSA volunteers. • Lundbeck
“The 34th Annual HDSA Convention not only set a Team Hope Walk through the historic streets of Friday night’s HDSA National Youth Alliance The Convention culminated with Saturday
GOLD NONPROFIT SPONSOR
new attendance record, but it also confirmed the Talent Show raised more than $35,000 for the night’s elegant Gala Reception where HDSA
momentum of the NYA Scholarship Fund which sends children honored individuals and groups for outstanding HDSA 2019 NATIONAL AWARDS • CHDI Foundation / Enroll-HD
HD community and young adults impacted by HD to the achievements with the HDSA 2019
Woody Guthrie HDSA Excellence SILVER SPONSORS
that is actively HDSA Convention each year. National Awards (see list at right).
Advocacy Award in Care Award • Ionis
working to
Seth Rotberg and Dr. Samuel Frank • uniQure
improve the
Therese Crutcher-Marin
lives of Marjorie Guthrie Award BRONZE SPONSORS
everyone HDSA Youth Award Patricia McLane and • MassMutual SpecialCare
Hallie Kile Morgan McLane • Voyager
Researchers of the Year HDSA Person of the Year • Wave Life Sciences
Dr. Darren Monckton and Alexandra Boothby
FRIEND SPONSORS
Dr. Vanessa Wheeler
E.J. Garner, HDSA Board of • Archcare
HDSA Chapter of the Year Directors Chair (l.) and Louise • BioTek reMEDys
HDSA New Jersey Chapter Vetter, HDSA President & • Broda
CEO (r.) present Alexandra
HDSA Affiliate of the Year Boothby HDSA’s 2019 • Next Step Healthcare
HDSA Connecticut Affiliate Person of the Year Award. • PTC Therapeutics
• Sanofi
Inaugural
• Spark Therapeutics
Long-Term
• UMass Medical School
Care Award
• Vaccinex
Sitrin Health
• WilmerHale
Care Center
8 9
HDSA ADDS THREE TRUSTEES TO NATIONAL BOARD HDSA’S NYC MARATHON TEAM RAISES MORE THAN $133,000
The Huntington’s Disease Society of America is Jay Hughes is MGIC’s Executive Vice President of Jonathan Klein is Chair of the Mergers and HDSA’s 2019 New York City Marathon team
excited to welcome three new members to the Sales and Business Development. He began his Acquisitions Group at DLA Piper in New York City. featured twenty-five runners from twenty different HDSA’s 2019 New York City
Society’s national Board of Trustees. career with MGIC in 1987 as an Account Executive He concentrates his practice in the areas of mergers States across the US all willing to take on 26.2 miles Marathon Team:
in the northern Virginia market. After moving to and acquisitions, private equity, corporate finance, to support the fight against HD. To date, the team
Wendy Erler is the Vice President of STAR and Patient Mark Adler, Kari Baker, Jennifer Bandley,
California in 1998 to assume the role of Sales securities matters and restructuring for both raised more than $133,000 finishing in the top 18
Insights and Advocacy at Alexion Pharmaceuticals Madeline Bolton, Michael Boyle, Aly Boyle,
Manager, Jay was promoted to Vice President- domestic and international clients. Jonathan has among all NYC Marathon Charity Partners!
where she is responsible for building an enterprise Molly Corse, Samantha Cox, Carlos Fonts,
Managing Director in 2001 covering MGIC’s represented US and foreign clients in connection
holistic solution model to gather and incorporate Jonathan Harrison, Emily Lefler,
Pacific Region. In 2014, Jay accepted the position with cross-border acquisitions, divestitures, joint
patient insights throughout the drug development Janine Lind Trembicki, Paula Lintz, NEW LOOK, NEW RESOURCES
of Senior Vice President, Sales and Business ventures, private financings, loan restructurings and
and commercialization processes. She leads the Jessica Marsolek, Erin Milek, Jessica Parker,
Development and relocated to Milwaukee, workouts and general corporate matters. Jonathan AT HDSA.ORG
Global Patient Advocacy function and has responsibility Alycia Patty, Carolyn Plaza, Ricardo Puente,
Wisconsin. In his current role as Executive Vice received his J.D. from Georgetown University Law
the advocacy team. Previously, Ms. Erler was on the Craig Robinson, Amber Rutledge, Michael Shea, In January HDSA released a new website
President of Sales and Business Development, Jay Center where he graduated cum laude and his B.S.
executive leadership team at Wave Life Sciences Rod Thompson, Kristen Westdorp and Sara Witzl. design with improved navigation, Google
is responsible for MGIC’s five regions, our National from Cornell University.
where she led Patient Advocacy and Commercial. Translate and other exciting new features
Account relationships and Marketing. He holds
Wendy graduated from Miami University and “We are thrilled to welcome Wendy, Jay and found at HDSA.org!
a Bachelor of Science degree in Finance from the
earned her MBA from St. Joseph’s University. Jonathan to HDSA’s Board of Trustees,” said
Villanova School of Business. COUNTRY STAR CHRIS STAPLETON
Louise Vetter, HDSA’s President & Chief Executive
Officer. “Their diverse skills and experiences will SUPPORTS HDSA
help contribute to the Society’s ability to achieve After being introduced to HDSA’s rich ‘THIS WEEK IN HD RESEARCH’ BLOG
its mission and support families affected by HD.”
musical history and incredible mission, singer-
HDSA’s Leora Fox, PhD provides
In other Board-related news, Kamran Alam was songwriter Chris Stapleton donated $5,000
weekly updates in the This
appointed Treasurer and Jenne Coler-Dark will to improve the lives of people with HD and
Week In HD Research blog.
assume the role of Secretary. Bill Klein and Jennifer their families.
Dr. Fox keeps you up-to-date
Leyton have successfully fulfilled their six-year term
on HDSA research activities,
as integral members of HDSA’s Board of Trustees.
recently published work about
We are grateful for the exceptional volunteer Huntington’s disease, historical
leadership that guides our mission work! Clockwise from left: Craig Robinson, moments in HD research and more. Follow
Samantha Cox, Kari Baker, and Janine Lind Trembicki the blog at HDSA.org/blog
Special thanks to the accounting firm EisnerAmper
for being the team’s Presenting Sponsor. The team’s
Wendy Erier Jay Hughes Jonathan Klein FOLLOW US! HDSA.ORG
fastest runner was Craig Robinson who finished
with an impressive time of 2:34:55 — good enough
facebook.org/HDSofA @HDSA
for 118th overall! The team’s top fundraiser was Kari
Baker from Florida who raised more than $11,000! HDSANational HDSA.org/Youtube
10 171
HD LEGACY — INSPIRATIONAL RUNNER SUPPORTING HDSA CHARITY NAVIGATOR AWARDS HDSA 4 STARS —
THE GIFT TO FUTURE GENERATIONS HIGHLIGHTED IN RUNNER’S WORLD MAGAZINE ITS HIGHEST RATING — FOR THE FOURTH CONSECUTIVE YEAR
In response to a growing need to study exactly what Gabby McNary who has tested positive for the HD gene, ran the Chicago “We are proud to announce Huntington’s Disease Society
Huntington’s disease (HD) does to the human brain, Marathon (her first) to honor her mother who she lost to the disease five years of America has earned our fourth consecutive 4-star rating.
HDSA and CHDI Foundation announced a new collabo- ago. She also raised over $4,000 for HDSA. Her inspiring story was featured This is our highest possible rating and indicates that your
ration in 2019 called HD LEGACY to support brain and in the October 14 edition of Runner’s World. organization adheres to sector best practices and executes
other organ donations from families affected by HD who its mission in a financially efficient way. Attaining a 4-star
would like to make a vital contribution to research. rating verifies that Huntington’s Disease Society of America
This new program encourages the donation of brain and exceeds industry standards and outperforms most charities in
other tissues from HD gene-expansion carriers, at-risk your area of work.
individuals, and healthy family controls. The Harvard Only 20% of the charities we evaluate have received at least 4 consecutive 4-star
Brain Tissue Resource Center (HBTRC) will assist evaluations, indicating that Huntington’s Disease Society of America outperforms
interested most other charities in America. This exceptional designation from Charity Navigator
families sets Huntington’s Disease Society of America apart from its peers and demonstrates
throughout the to the public its trustworthiness.”
process, and
families will Michael Thatcher, President & CEO, Charity Navigator
bear no costs associated with the donation.
“The decision to donate one’s body to science is an
amazingly selfless act,” said Louise Vetter, President and
HDSA LISTED IN TOP 10 VOLUNTEER OPPORTUNITIES
CEO at HDSA. “Participating in HD LEGACY is truly a
gift for future generations. The brains and other organs IN NEW YORK CITY BY GREAT NONPROFITS
donated through this program will leave a ‘legacy’ of
A woman whose mother was diagnosed with
hope, inspiring new knowledge that will someday stop
Huntington’s disease forwarded the following
HD in its tracks.”
comment to greatnonprofits.org about HDSA:
“Science still has a quite rudimentary understanding of
“I am a daughter whose mother was diagnosed with HD,
how the human brain works,” said Robi Blumenstein,
which I knew nothing about until I found this organization. It
President of CHDI Management, Inc. “Researchers need
not only answered the billions of questions I had, but also provided me with emo-
more brain donations from HD-affected individuals to
tional support from now friends. It gives me a sense of security knowing I am not the
better understand how HD affects the human brain, what
only person in the world going through this. This organization in a way saved my life.
happens to the different cell types and circuits that make
I was overwhelmed and ready to give up and they would NOT let that happen. For
up the brain over time. HD LEGACY will give us new
that I will always be truly thankful. This is an organization that helps people in every
insight into how to intervene therapeutically.” Gabby McNary comforts her Mom.
way possible. Thank you for all you have done and continue to do every day. I will
always be a proud volunteer HDSA.”
12 113
2019 REGIONAL UPPER MIDWEST REGION GREAT LAKES REGION NEW YORK / NEW JERSEY REGION NEW ENGLAND REGION
Twin Cities Team Hope Walk New York City Hudson Valley
EVENT HIGHLIGHTS Minnesota Chapter Team Hope Walk Team Hope Walk
$42,400 Greater New York Chapter New York/New Jersey
$116,300 Region
South Dakota $83,800
Every year, HDSA’s Team Hope Walk Celebration of
PACIFIC REGION South Dakota Chapter Hope Dinner
50+ Chapters and $37,100 Albany Chapter
$90,835
Affiliates host more Iowa Hoop-A-Thon Tour Sparkle Celebration Chicago
Iowa Chapter of Hope Celebration of Hope
than 300 events $27,000 Northeast Ohio Chapter Great Lakes Region
$185,000 $129,900
across the country
Illinois Team Hope Walk New England Region Boston Team Hope Walk
thanks to the amazing Illinois Chapter Celebration Massachusetts Chapter
$103,800 of Hope Gala $52,650
leadership of HD New England Region
$62,500 Tewksbury Team Hope Walk
families & volunteers. Massachusetts Chapter
$48,000
Here are just a few!
MID-ATLANTIC REGION
San Diego San Francisco Los Angeles
Team Hope Walk Team Hope Walk Team Hope Walk Team Hope Walk Philadelphia
Special thanks to our San Diego Chapter Pacific Region Los Angeles Chapter Chesapeake Affiliate Team Hope Walk
$115,000 $65,000 $65,000 $32,300 Eastern Pennsylvania
National Team Hope
Chapter
Sponsors Manassas $30,000
Team Hope Walk
SOUTH CENTRAL REGION
Mid-Atlantic Region
$30,797
Fairways for Hope
Rocky Mountain Chapter
$38,320
SOUTHEAST REGION
Denver Team Hope Walk
Rocky Mountain Chapter
$34,700 21st Annual Cure HD 28th Annual Cure HD
Golf Tournament Triathlon/Duathlon/
Anita Sabedra Tennessee Chapter Aquabike 2019
Team Hope Walk $124,129 South Florida Chapter
South Central $64,275
Region
$28,100 Atlanta Team Hope Walk
Georgia Chapter
$38,203
14 15
RESEARCH FUNDING PROGRAMS
2019 HUMAN BIOLOGY PROJECT FELLOWSHIPS
Highlights from Previous HD Human Biology Project Fellowships
Madeleine Sharp, MD Marina Papoutsi, PhD
Richard Hickman, MD
2016 Human Biology Fellow, 2017 Human Biology Fellow,
2018 Human Biology Fellow,
Postdoctoral Research Fellow, McGill University Postdoctoral Researcher, University College London
Neuropathology Fellow, Columbia University
The overall goal of Madeleine’s project was to Marina is a skilled statistician whose project
Richard’s HDSA funding is allowing him to work
uncover the mechanisms underlying common focused on the concept of “cognitive reserve,” the
closely with Dr. Jean-Paul Vonsattel to learn the art
cognitive and behavioral symptoms of HD. idea that intelligence, education, or an intellectually
of HD brain banking, an invaluable skill that enables
She designed tasks to detect subtle changes in stimulating lifestyle can be protective or delay
Danielle Larson, MD Osama Al Dalahmah, MD researchers to use donated human brain tissue. His
learning and memory, even in pre-symptomatic cognitive problems for people with the HD gene. In
HDSA fellowship also helped him to transition to an
Northwestern University Columbia University
carriers of the HD gene. She exceeded her enroll- 2019 she completed an analysis showing that HD
assistant faculty position at Columbia University. He
Feinberg School of Medicine Dr. Al Dalahmah will examine ment goals with a total of 79 HD patients, some patients with higher levels of education or a higher
is working with autophagy expert Dr. Ai Yamamoto
Dr. Larson will study whether how astrocytes, the brain’s of whom were recruited at HDSA’s National IQ had a slower rate of decline in mental abilities.
to explore how the brain’s waste disposal systems
remote “telemedicine” visits support cells, change over the Convention. This work is impactful from the This knowledge could be applied to design stimulat-
handle toxic huntingtin protein. Beyond potential
with a neurologist could be just course of HD to become harmful perspective of early diagnostics as well as potential ing interventions, encourage young people in HD
discoveries that could help harness the power of the
as helpful as in-person visits for versus helpful. interventions. Certain cognitive tasks shown to families to follow intellectual pursuits, or to stratify
cell’s clean-up crew to combat HD, the skills required
an HD patient or family. create long-lasting improvements in memory and patients in clinical trials.
to make use of precious brain donations from HD
reward processing could potentially be powerful and
families are highly sought after.
In October of 2019, HDSA awarded five
safe approaches to treating early changes in thinking.
grants under the Society’s largest research
initiative, the HDSA Huntington’s Disease
Human Biology Project. These grants,
totaling $575,000, represent HDSA’s
patient-centric research focus which brings
basic and clinical researchers together to
facilitate Huntington’s disease science in
Vilija Lomeikaite, PhD candidate Ricardo Mouro-Pinto, PhD Saul Martinez-Horta, MsC,
the human condition. Applicants worldwide
University of Glasgow Massachusetts General Hospital Sant Pau Hospital, Barcelona
proposed projects addressing HD through
Vilija will work on improving and Harvard Medical School Saul will examine what kinds
small clinical studies or donated human
the existing methods to detect Dr. Mouro-Pinto will focus on the of changes are happening in 2016 2017 2018
samples. This year’s winners hail from
an increase in CAG repeats in biology of CAG repeat expansion the brain and blood when HD
Scotland, Spain, and the United States.
certain cells of the body and in hopes of developing drugs to patients begin to have difficulty
brain during the course of HD. stop this process. with planning and memory.
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