Table Of Content2020 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
and prepare for a very bright future. The COVID-19 teams with six satellite sites across the country. stay-at-home events.
PRESIDENT & CEO MESSAGE 1
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
HDSA CENTERS OF EXCELLENCE 2 thing from our everyday lives to the way we do 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 five 2020 Donald A. King
Without hesitation, we transitioned from in-person $223,000 and generated an enormous amount
2020 MISSION REPORTS 18
Summer Research Fellowships, a vital program to
events to virtual gatherings to continue to support of awareness thanks to the work of the Freeze HD
Research 18 train the next-generation of scientists with research
HD families across the country in the safest and most Committee.
Advocacy 19 expertise in Huntington’s disease.
accessible manner. Thanks to the inspiring generos-
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 in New Orleans for the 35th Annual HDSA Convention,
stronger. At HDSA we evolved to strengthen our
Support & Services 22 that HD families need, especially during the we quickly transitioned to a completely virtual
connection to HD families through virtual events and
Disability Programs 23 pandemic. event which welcomed more than 6,200 live resources without losing the inspiration and hope
viewers from 93 countries! This record-setting
In fact, because of COVID-19 we saw a huge increase that the HDSA community provides — and requires.
36TH ANNUAL HDSA CONVENTION 24 participation was made possible by the commitment
in the use of HDSA’s free online support services,
Thank you for your continued support in the fight
of our speakers, exhibitors and sponsors and the
such as online support groups and telehealth
MISSION & VISION dedicated volunteers who ensured that the help against Huntington’s disease. If 2020 taught us
counseling, as well as HDSA’s nationwide network
anything, it’s that it will take much more than a global
STATEMENTS Inside Back Cover and hope that defines HDSA’s Conventions was
of social workers. Our website, HDSA.org, became
pandemic to keep HD families from fighting for the
preserved and expanded in this new format.
an even more important cornerstone for families
BOARD OF TRUSTEES Inside Back Cover Hopefully we will be able to bring Convention ones they love.
seeking information and resources, and HDSA’s
to Spokane, Washington in early June 2021, Gratefully,
library of webinars and video resources grew to meet
STAFF LEADERSHIP Inside Back Cover
but regardless, robust online Convention content
the increased demand.
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
E HDSA Centers of Excellence Expands to 50 Sites First HD Patients Dosed In uniQure Gene 2020 Berman-Topper Family
C Therapy Study at HDSA Center of Excellence HD Career Development Fellowship
Early in the year, the Huntington’s Disease Society of America announced
N 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
E
uniQure announced in a press release that two Massachusetts Medical School was awarded
The 2020 HDSA Centers of Excellence program
L brave participants had undergone the brain surgery the 2020 HDSA Berman-Topper Family
expanded to 50 Centers from 47 in 2019, and
L required to deliver the experimental huntingtin- HD Career Development Fellowship.
from just 20 in 2015. The four new Centers
E lowering therapy
of Excellence are: Henry Ford Hospital This prestigious fellowship, made possible due to
AMT-130. The
C (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
X 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
E 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
F
Huntington’s disease that share an exemplary
create a genetic weapon, a micro-RNA, that stops “On behalf of the Topper and Berman families,
O 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,”
S
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
R 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
E 33 states plus the District of Columbia. This year, HDSA will be awarding research, and we are sure that her contribution will
T a total of $1,550,000 to the Centers of Excellence program. be significant.” Dr. Yasaman Gholamalipour
N
To learn more about HDSA’s Centers of Excellence program
E please visit HDSA.org/COE.
2016 Dr. Ricardo Mouro-Pinto, Massachusetts General Hospital
Striatum
C
Dr. Tamara Mauri, McMaster University
Previous Recipients 2017
A Dr. Sarah Hernandez, University of California at Irvine
of the Berman-Topper
S HD Career Development
2018 Dr. Rachel Harding, University of Toronto
Fellowship
D
Dr. Lauren Byrne, University College London
H 2019
Dr. Nicholas Caron, University of British Columbia
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-
“Identifying Novel Neuroimaging Biomarkers in Feasibility of Assessing mHTT and wtHTT mRNA Levels
brain barrier derived from
Early Pre-Manifest Huntington’s Disease” in CSF-Derived Exosomes”
human cells.
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
HDSA Introduces Eliza Gilkyson, Sarah Lee Guthrie, anonymous donor matching the gifts, the
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 Joel Rafael and Marc Scibilia.
YouTube Video Series
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
a player from all 32 NFL teams to design a pair of The couple discuss Huntington’s disease Singer/songwriter and dear friend of HDSA, Marc Scibilia, performed a special rendition of the
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. This Land Is Your Land!
ABOVE: George Yohrling, PhD, HDSA’s Chief Scientific
Thank you Ito!
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,
Virtual 6th Annual Freeze HD event on Saturday, Joe Smith, Rod Man, Britney Young and many
Thank You to Our 2
September 26th which raised more than $223,000 more. There were also extraordinary music 16
Generous Sponsors!
to support the fight against Huntington’s disease. performances by Zac Barnett, Shoshana Bean,
Due to the COVID-19 pandemic, the Huntington’s Brian Logan Dales, Leslie Powell, The Edge Effect GOLD SPONSORS
Disease Society of America transitioned the world’s and Tyson Ritter. n Genentech 17
largest and most-anticipated HD fundraising event n Neurocrine 3 15
The bidding in the Virtual Auction was fierce up
to a virtual format. Hosted live by actor Scott Porter n uniQure
until the last second. 2,037 bids were placed
from a secure location in Los Angeles, Freeze HD 4 14
throughout the evening on more than 100 auction SILVER SPONSORS
featured an incredible online auction, live music
items, but the most coveted was a Supernatural n Bel Aire Internet
with Brian Logan Dales from The Summer Set
television series memorabilia package donated by n Marron Foods
and dozens of videos from celebrities offering
Jared Padalecki that garnered 193 bids! n Wave Life Sciences
their support in the fight against HD.
Immediately following the Freeze HD program, BRONZE SPONSORS
“Each year, Freeze HD is star-studded call to action
guests who donated at least $50.00 were invited to n Fake Empire 5 13
to stop Huntington’s disease in its tracks. While
an exclusive VIP Afterparty hosted by comedian n Keyes Real Estate
we missed gathering in person, hosting the event
Rod Man. The hour-long Zoom event featured an n Temple Hill Productions
virtually reached the global HD community and
opportunity to meet Kate Miner, Marianna Palka,
allowed more families to connect and be inspired BAR SPONSORS
Scott Porter and Jason Ritter, as well as take part
in this fight,” said HDSA’s President & CEO n After Hours Theatre Company
in a fun trivia game that gave away a $100 Amazon
Louise Vetter. “This was a Herculean task by our n Jessica & Tammy Cain 6 12
gift card to the winner.
host Scott Porter, event founders Marianna Palka Phil & Tamar Koosed 11
and Jason Ritter, and the entire Host Committee, Thank you to the Freeze HD Host Committee: n Netflix 7
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 FRIEND SPONSORS
Hamilton, Gentille Koosed, Jaylen Moore & Britt
and Terry Palka and featured appearances by n Brillstein Entertainment Partners 8 10
Logan, Justin & Kate Miner, Elliott & Tracy Owen,
Shakira Barrera, Wilson Bethel, Rachel Bilson, n Blake & Jenne Coler-Dark
Kelsey Porter, Carly Ritter, Nancy Morgan Ritter,
Alison Brie, India De Beaufort, Tom Ellis, Noel n Fidelity National Title
Tyler & Lelia Ritter, Emily & Jamie Rodgers, Alana
Fisher, Courtney Friel, Neil Gaiman, Kimmy n NRE Commercial Real Estate
Yankowitz and Jason Ziven.
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 OVER
to HDSA’s four dedicated members: Laura Rouse, Claire Sanders, Gail Shurlow and Maddie Snowdon. supporting HDSA and encouraging folks around the
new Board members Angela Allen, Mark Coe,
1. Stacy Coen (inset) strikes a strong “Cure HD” pose before her Dr. Erin Furr-Stimming, Kelsey Porter and $146,500 world to join the fight against Huntington’s disease.
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 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
HDSA Social Media
week with the This Week In HD Research blog.
2 3
Get the latest news by following HDSA’s social media channels!
Get the latest in
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
• LinkedIn: linkedin.com/company/huntington’s-disease-society-of-america/
Assistant Director,
Research and Patient
4 5
Engagement
10 11
2020 REGIONAL
UPPER MIDWEST REGION GREAT LAKES REGION NEW YORK / NEW JERSEY REGION NEW ENGLAND REGION
(North Dakota, South Dakota, (Wisconsin, Michigan, Illinois, (New York, New Jersey) (Vermont, New Hampshire, Maine,
Nebraska, Minnesota, Iowa) Indiana, Ohio, Missouri, Kentucky) Massachusetts, Rhode Island, Connecticut)
EVENT HIGHLIGHTS NYC Team Hope Walk
South Dakota Team Hope Walk Naperville Team Hope Walk NYC Chapter Celebration of Hope — James Bond Style
South Dakota Chapter Illinois Chapter $104,600 New England Region
$22,500 $115,450 $61,212
New Jersey
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
MID-ATLANTIC REGION
a few! $40,000
(District of Columbia, Delaware, Maryland,
Western Washington Virginia, West Virginia, Pennsylvania
Team Hope Walk
Woods Warrior
Washington Chapter
Western PA Chapter
$32,180
$10,377
Fast Track
Western PA Chapter
SOUTH CENTRAL REGION SOUTHEAST REGION $7,163
(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
Team Hope Sponsors 16th Annual Hero’s vs. Team Hope Walk
Villains Virtual Run & Walk Georgia Chapter
Rocky Mountain Chapter $29,837
$26,747
South Carolina
6th 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
which was scheduled to be Marc Scibilia paid tribute to the 80th 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 Griffin with the Marjorie SPONSOR SPONSOR SPONSOR
participants from 93 nations around the world Guthrie Award. The Closing Ceremony concluded
sessions
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 2021
The Virtual Convention featured nearly all of the live views Convention! We look forward CONVENTION
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
series, Here’s the Deal.
Anne had the critical
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; actor Patrick 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
