hdsa 2018 yearinreview spreads

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Huntington’s Disease 2018 Year In Review
Society of America
Looking Back. Moving Forward.
Dear Friends, providing direct assistance through our extensive
Looking Back. Moving Forward.
network of support groups, social workers and
2018 was an opportunity for us to reflect on
HDSA Centers of Excellence.
50 years of service to the Huntington’s disease
community and look ahead to continuing our mission Because of you, we are helping more families than
to improve the lives of everyone with HD and their ever before and laying a path to healthier tomorrow.
families. Thanks to exciting advancements in HD On behalf of the entire HD community, thank you!
research we have more resources and hope than
Where do we go from here?
ever before. No longer are we wondering “if” we
Luckily, that’s another simple
can defeat HD; now it’s just a matter of “when”!
answer… we keep moving
How did we get here? forward. There’s a lot of work to
Well, it’s pretty simple… be done in order to help every
The answer is you! family affected by Huntington’s
disease. We must continue to
Whether you attended an
grow in numbers, continue to
HDSA event, participated
provide more resources to HD families in need
in an awareness campaign,
and make that one day without HD… today.
or made a gift online, your contribution directly
supported HDSA’s research, education and We are so grateful for the amazing dedication and
advocacy programs. support of the HD community and our partners in
this fight. We look forward to providing more help
Perhaps you joined the ENROLL-HD study, participated
and hope in 2019, and to seeing you at HDSA events
in a clinical trial or completed surveys that played
across the country. (Visit www.HDSA.org and mark
an integral role in providing researchers with
your calendar for our 34th Annual HDSA Convention
valuable information? Your direct involvement in
in Boston this June!)
clinical science is helping doctors and scientists
with insights that are improving care today. Thank you,
Maybe you helped one of HDSA’s incredible
Chapters and Affiliates around the country serve
and support HD families? The volunteer leadership
of HD families nationwide is what brings HDSA’s Louise Vetter,
mission to life — raising awareness of HD, educating President and Chief Executive Officer
communities about the needs of our families and
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2018 Highlights
LOOKING BACK HDSA Centers of Excellence Expand to 43 Sites E.J. Garner Appointed Chair of the National Board of Trustees

Kamran Alam, Dr. Leslie Thompson and Dr. Vicki Wheelock Join HDSA’s Board of Trustees
ON 50 YEARS OF SERVICE TO THE
The 2018 HDSA Centers of Excellence program The Huntington’s Disease Society of America disease. She is the grandmother of twin grand- their mission and inspire
HUNTINGTON’S DISEASE COMMUNITY
expanded to 43 Centers from 41 in 2017. Since (HDSA) National Board of Trustees has elected daughters who are at-risk of HD. Her first husband them to get involved in
2015 the program has grown from just 20— E.J. Garner as new Chair replacing Dr. Arik Johnson passed from Huntington’s disease in 2002, and the battle against HD.”
Throughout 2018, HDSA recognized 50 years a 115 percent increase in four years. The HDSA who completed his two-year term. Dr. Johnson will her son Scott died at age 44 from complications of
In addition to Mrs. Garner’s
of service to the HD community and paid Centers of Excellence are multi-disciplinary care now serve as Past Chair for a two-year term, and HD in 2015. Additionally, her grandson, brother to
appointment, Kamran
tribute to the legacy of its founder, Marjorie teams with expertise in Huntington’s disease that Dr. Victor Sung, Director of the HDSA Center her granddaughters, Matthew, died at age 6 from
Alam, Dr. Leslie Thomson
Guthrie. In 1967, Marjorie founded the share an exemplary commitment to bringing of Excellence at the University of Alabama at Juvenile HD in May 2008. A long-time resident of
and Dr. Vicki Wheelock
Committee to Combat Huntington’s Disease comprehensive care. Birmingham, has been appointed Chair-Elect. Southern California, she recently moved to Olympia,
have recently been elected
(now known as the Huntington’s Disease WA with her husband, Art, to be close to her grand-
With the continued Mrs. Garner has to join HDSA’s National
Society of America) after her husband and daughters and daughter-in-law. After 40 years with
growth of the program, been an active HDSA Board of Trustees. Mr. Alam is Kamran Alam
music icon Woody Guthrie died from HD Toyota Motor Sales, U.S.A., Inc. she retired from a
HDSA is bringing volunteer since 2006 currently the Vice President,
when he was only 55 years old. Marjorie set career of various management positions including,
more ‘boots on the and has served on Finance and Treasurer at
out to “do something” about this devastating administration, marketing, merchandising, and dis-
ground’ to support The HDSA Centers of Excellence provide an elite HDSA’s National Board AveXis, Inc., a Novartis
brain disorder that also threatened their tribution/logistics. E.J. holds a Bachelor’s of Science
HD affected families team approach to Huntington’s disease care and of Trustees since 2015. Company in Bannockburn,
children. Ms. Guthrie began her crusade degree from University of Redlands in California.
across the United States with care locations in research. Patients benefit from expert neurologists, She was on the board of Illinois. Dr. Thompson is
against HD by traveling the world to meet
30 States plus the District of Columbia. In addi- psychiatrists, therapists, counselors and other HDSA’s Orange County “It is an honor and a privilege to be appointed a world-renowned HD
with doctors, researchers, politicians and
tion, four Centers have partner sites to expand professionals who have extensive experience Chapter from 2008 Chair of HDSA’s Board of Trustees,” said Mrs. Garner. researcher and currently a
families to generate more awareness for
care in Oregon, California, Tennessee, Mississippi working with families affected by HD and who work to 2013 and served as “The Board is made up of a fantastic group of professor at the University
Huntington’s disease. Her extraordinary
and Alabama. This year, HDSA awarded a total of collaboratively to help families plan the best HD Chapter President from doctors, scientists, researchers, family members of California-Irvine School
dedication to finding treatments and a possibly
$1,264,250 to the Centers of Excellence program, care program throughout the course of the disease. 2010 to 2012. She was and others committed to finding a cure for of Medicine. Dr. Wheelock is
a cure for HD has led to so many advances
an increase of $104,500 from last year. Applications to become an HDSA Center of named the Chapter’s Volunteer of the Year in 2011 Huntington’s disease. Having lost a son and grand- a beloved and well-respected
in neuroscience putting scientists on a path Dr. Leslie Thompson
Excellence are open annually to all clinics in the and was recognized as one of the top fundraisers son to HD, I feel a special responsibility to help neurologist at HDSA’s Center
to one day rid the world of HD. “HDSA’s Center of Excellence program is the corner-
United States who share HDSA’s commitment to of HDSA Team Hope Walk in 2013 and 2015. In represent the thousands who face the challenges of Excellence at the University
stone of comprehensive care for families affected by
high-quality, comprehensive care and access to tribute to her son and grandson and in an effort to of the disease every day. Just as those fighting HD of California-Davis.
Huntington’s disease,” said Louise Vetter, HDSA’s
clinical research. raise awareness and funds for the fight against HD, daily inspire me, I hope to inspire others to support
President & Chief Executive Officer. “With multi- Special thanks to
E.J. embarked on the 554 mile Camino de Santiago and get involved with their local HDSA Chapters
disciplinary care teams that include neurologists, Ms. Vetter added, “In addition to exceptional care, Dr. Jang-Ho Cha,
pilgrimage in mid-August 2015. Walking the and Affiliates. As advances in HD research and
mental health professionals, genetic counselors, HDSA Centers of Excellence are on the frontlines of Dr. Michelle Gray and
entire route with a 23-pound backpack, she raised treatments reach market and the hope for a cure
social workers and more, an HDSA Center of the development of new HD therapies. Each Center Arvind Shreedharan
more than $16,000 for HDSA Team Hope Walk. grows, HDSA must continue to grow and continue
Excellence means a medical ‘home’ for HD families is required to support clinical research and most of who have completed their
Currently she is trekking the 21 California Missions to assist those dealing with the disease on a daily
and a place where their complex needs can be them offer families direct participation in important terms on HDSA’s National
Trail (approximately 800 miles). basis, those with HD and the families and friends
addressed capably and with compassion. Now observational studies and drug development trials. Board of Trustees. Each will
that support them. I also look forward to working
with forty-three centers nationwide, more families HDSA Centers of Excellence are the epitome of E.J. has been deeply affected by Huntington’s remain involved in advisory
with HDSA’s National Youth Alliance and supporting Dr. Vicki Wheelock
have access to high-quality HD care.” the help and hope that has guided our mission roles within the organization.
for fifty years.”
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Enroll-HD
Reaches 20,000 Brendan Fletcher, Dave Hause, and
Participants Worldwide! Loudon Wainwright III with daughter Martha
Enroll-HD’s 20,000th participant was
HDSA’s New York City Marathon Team Freeze HD Event Raises Nearly $200,000 May is HD Awareness Month,
recruited at the study site in Leuven, Belgium.
So #LetsTalkAboutHD!
This extraordinary milestone was made Twenty-five runners from across the United States On September 22, 2018 more than 300 guests
possible thanks to the efforts of the ran the 2018 TCS New York City Marathon to support attended the Fourth Annual Freeze HD event in Each May the Huntington’s Disease Society of
sites and the families. For more the Huntington’s Disease Society of America. Los Angeles that raised nearly $200,000! The America turns up the global volume on HD aware-
info about Enroll-HD please HDSA’s Marathon Team raised nearly $120,000 event was held at Neuehouse in Hollywood and ness by getting little help from our celebrity friends.
Marc Basch and Brett Haley
visit www.enroll-hd.org to support HDSA’s mission. The top fundraiser honored long-time supporter and HD family From musicians and actors to athletes and journalists,
for 2018 was Maggie Kiselick from New York City member Kipenzi Chidinma. The evening included new folks take part in the #LetsTalkAboutHD
Inside the O’Briens
who raised more than $10,000! Thank you to all an incredible auction, delicious food and live video campaign to educate more people about
Coming to the Big Screen
our runners, supporters and to EisnerAmper for entertainment. Celebrities such as Scott Porter, Huntington’s disease. With the power of social
sponsoring HDSA’s Charity Cheer Zone. Director Brett Haley and co-writer Marc Basch have Jason Ritter, Tyler Ritter, Caitlin Carver, Kate media, HDSA has been able to generate more
2018 HDSA NYC MARATHON TEAM ROSTER: been working with the Huntington’s Disease Society Miner, Angelique Cabral, Jeff Meacham and many HD awareness than ever before!
of America to meet with HD families in order to more were on-hand to generate much-needed funds
Samantha Alexander, Ray Baldwin, Ally Bejma, HDSA kicked off HD Awareness Month with Night
prepare for the film adaption of best-selling author and awareness for the HDSA family.
Arthur Bergoeffen, Jonathan Bolick, Julie Chagnon, of the Machine — a concert a Le Poisson Rouge in
#MyCauseMyCleats
Lisa Genova’s novel Inside The O’Briens —
Peter DeVore, Caralyn Duke, Derrick Flanders, New York City featuring Brendan Fletcher, Dave
with NFL Superstar Aaron Donald a story of a Boston family’s struggle with HD.
Brad Golden, Rhonda Hannahane, Raegan Heitzenrater, At Left: Jenne Hause and Martha Wainwright to pay tribute
The NFL campaign Marianna Jamadi, Philip Kiselick, Maggie Kiselick, Coler-Dark, Kate to the organization’s music heritage. Martha was
#MyCauseMyCleats M.C. Kiselick, Brenda Lager, Carmen McDowell, Here’s The Deal Miner and Becky joined on stage by her father, Loudon Wainwright III.
gives players the Brendan Milnamow, Katharine Moser, Renee Moser, Johnson
HDSA’s Here’s the Deal is a new series on HDSA’s
opportunity to Daniel Pirrello, Amanda Polli, Mallory Temple and Below: Tyler Ritter,
YouTube channel that tackles important topics to
This Week In HD Research
support their Jessica Wickers. Scott Porter, Louise
help you navigate through your journey with
favorite charities by Vetter, Kipenzi In 2018 HDSA launched This
Huntington’s disease. Hosted by HDSA’s Jennifer Chidinma and
wearing custom cleats. Week In HD Research. This
Simpson, LCSW, Here’s The Deal provides incredible Jason Ritter
Aaron Donald from the L.A. Rams wore weekly blog is curated by
insight into subjects such as suicide, survivor’s guilt,
cleats featuring the HDSA’s Dr. Leora Fox who
relationships and much more.
HDSA logo to support provides updates on HD
families affected by science and meaningful
Huntington’s disease. Jennifer Simpson (at science news from around the
left) interviews NYA’s
world. To read the latest post visit
Mary Ann Emerick.
Photo: Mark J. Rebilas, HDSA.org/blog.
USA TODAY Sports
From left to right: Daniel Pirrello; Caralyn Duke with
top fundraiser Maggie Kiselick; and Ally Bejma
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HDSA National
Convention Awards
Woody Guthrie Advocacy Award
Frances Saldana
HDSA Excellence In Care Award
Convention,” said HDSA’s President & CEO Louise Friday morning’s opening ceremony featured powerful the NYA Convention Scholarship Fund which For the 20th year, Marie Nemec and Kaiser Permanente Northern California
Vetter. “Throughout the entire Convention there keynotes from Anna Canoni and Bill Johnston, sends youth to Convention each year. Charlotte Reicks led a team of dedicated
HDSA Marjorie Guthrie Award
was a clear message to follow in Marjorie Guthrie’s respectively. Anna, who is the granddaughter of The much-anticipated Research Forum on Saturday advocates who once again rode bicycles to the The Johnston Family
footsteps to ‘do something’ about this devastating Woody and Marjorie Guthrie, shared her family HDSA Convention while raising money for HDSA.
HDSA’s 33rd Annual Convention featured a first-of-its-kind panel which presented
HDSA Research Award
disease. Fifty years ago Marjorie began her crusade story on how the Guthries were impacted by HD To date, Bike For The Cure has raised more than
June 7-9, 2018 / Los Angeles, CA the history of the discovery of the HD gene and Dr. James F. Gusella
against HD, and today we continue her legacy by and Marjorie’s extraordinary determination to $730,000!
how it has led to the development of a promising
The Huntington’s Disease Society of America bringing together the entire community to provide establish the Committee to Combat Huntington’s HDSA Person of the Year
new potential therapy for HD using antisense The 33rd Annual Huntington’s Disease Society
(HDSA) hosted its 33rd Annual Convention from help and hope to all families affected Disease (now known as the Huntington’s Disease Jeannette Garcia
oglionucleotides. The panel included Dr. Jim of America Convention was made possible by
June 7th-9th at the Los Angeles Marriott in Cali- by Huntington’s Society of America) fifty years ago. San Diego
Gusella, Dr. Anne Smith, Dr. Holly Kordasiewicz, the generous support of its Affiliate of the Year
fornia. With 1,046 disease.” Padres’ executive and HD family advocate Bill
Dr. Robert Pacifici, Dr. Doug Macdonald, Dr. Ed sponsors: Archcare, BioTek, Central Maryland Affiliate
attendees, this was Johnston then discussed his family’s battle against
The HDSA Conven- Wild, Dr. Blair Leavitt, Erik Lundgren, Dr. George reMedys, Broda, Enroll-HD,
Chapter of the Year
the largest Conven- this devastating brain disorder and encouraged
tion kicked off on Yohrling and HD family advocate Amy Fedele. Genentech, Huntington Study
Greater New York Chapter
tion in the 50-year families to follow in Marjorie’s footsteps to get
Thursday with its Group, Ionis Pharmaceuticals,
Dr. Jeff Carroll and Dr. Wild from HDBuzz.net also
history of the orga- involved and “do something”.
ceremonial Team Lundbeck, Mass Mutual,
delivered an informative and highly entertaining
nization breaking
Hope Walk and Immediately following the Opening Ceremony, PTC Therapeutics, Tagi Pharma,
update on HD research.
the previous record
carnival-themed the HDSA Convention featured workshops led by Teva Pharmaceuticals, uniQure,
of 1,001 in Minnesota Saturday night’s Awards Dinner and Gala closed
Welcome Recep- world-class researchers, caregivers, social workers, Vaccinex, Voyager and
back in 2011. The out this memorable Convention with amazing food,
tion. Guests were clinicians and other experts. WAVE Life Sciences.
HDSA Convention entertainment and dancing. HDSA National
greeted by a sur-
On Friday night at the annual HDSA National
is the world’s largest Convention Awards were presented on Saturday
prise video greeting
Youth Alliance (NYA) Talent Show attendees were
conference for evening (see list at right). HDSA also recognized
from actress Bryce
entertained with music,
families affected by Huntington’s disease. both the Guthrie and Wexler Families in a special
Dallas Howard who
dance, standup comedy
tribute that was presented by Anna Canoni.
“On behalf of the HDSA Board of Trustees, staff donated four tickets to the LA premiere of her latest
and magic. The show
and volunteers I would like to thank everyone who film, Jurassic World: Fallen Kingdom.
raised more than
supported and attended the 33rd Annual HDSA
The excitement did not stop $30,000 to support
there, Bryce then introduced
an HDSA Convention exclusive
sneak peek and extended
trailer of the film.
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Sioux Falls Team Hope Walk
HDSA 2018 UPPER MIDWEST REGION GREAT LAKES REGION NEW YORK / NEW JERSEY REGION NEW ENGLAND REGION
South Dakota Chapter
$45,572
Twin Cities Team Hope Walk New York City Team Hope Walk
Regional Event Highlights
Iowa Hoop-A-Thon Tour
Minnesota Chapter Greater New York Chapter
Iowa Chapter
$48,957 $93,600
$25,729
New Jersey Team Hope Walk
Every year, HDSA’s 50+ New Jersey Chapter
PACIFIC REGION
$88,193
Chapters and Affiliates
2018 Albany Wine Tasting — Corks & Forks
host more than 300 Albany Chapter
$83,400
events across the country 9th Annual Illinois Team Hope Walk
Northeast Ohio Chapter Illinois Chapter
thanks to the amazing Celebration of Hope $109, 500
New England Region Boston Team Hope Walk
Northeast Ohio Chapter
leadership of HD families $181, 870 Liberty, MO Celebration of Hope Massachusetts Chapter
Regional Event $43,268
Team Hope Walk
and volunteers. Regional Event $60,000
Tewksbury Team Hope Walk
$86,375
Celebration of Hope Gala San Diego Team Hope Walk Massachusetts Chapter Event
Here are just a few! A World of Sports — San Diego Chapter $33,000
According to Joe Buck $85,000
San Diego Chapter
$380,000 San Diego Shoot To Cure HD
San Diego Chapter
$79,000
MID-ATLANTIC REGION
Special thanks to our
National Events Sponsor
6th Annual Fast Track for a Cure
District of Columbia Western Pennsylvania Chapter
SOUTH CENTRAL REGION
Celebration of Hope — $20,200
Derby Style
Washington, D.C. Philadelphia Team Hope Walk
Heroes vs. Villains
Metro Chapter Eastern Pennsylvania Chapter
5K Walk/Run
$38,360 $18,300
Rocky Mountain Chapter
Teva Neuroscience: National Team $42,700
Hope and National Celebration of
4th Annual Austin, Texas SOUTHEAST REGION
Hope Sponsor
Team Hope Walk
Regional Event 20th Annual Cure HD 27th Annual Cure HD
$28,267 Golf Tournament Triathlon
Tennessee Chapter South Florida Chapter
South Houston “Sabedra”
$418,930 $59,442
Team Hope Walk
Greater Houston Area Affiliate Atlanta Team Hope Walk
$21,000 Georgia Chapter
$43,064
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Research Report
BY GEORGE YOHRLING, Ph.D.
Hope shines brighter than ever that future generations GENERATION-HD1 and other HD trials will be long
may one day be free of Huntington’s disease. and require an unprecedented amount of commit-
ment from not only HD families, but also the clinic
It has shaped up to be a year unlike any other for the
staff that will run these studies. We know that the
HD community. In 2018, HDSA commemorated 50
demand to participate in GENERATION-HD1 will
years of service to the HD
outpace available spots, and this will undoubtedly
community and this year
be devastating news to many families. However, we Roche’s Erik Lundgren speaks at the Research
also marked the 25th an-
are fortunate that there are many other companies Forum at HDSA’s 2018 National Convention.
niversary of the identifica-
currently testing or making plans to test innovative
tion of the huntingtin gene.
HD treatments. progress that has been made by the HD research
The year culminated with
community. When the calendar turns to 2019, I know
the announcement from On December 19th, Roche/Genentech announced the
that the HD families around the world will be ready
Roche/Genentech that the first ever Phase 3 clinical US and Canadian locations for GENERATION-HD1
to answer the call for brave research volunteers to
trial to test a huntingtin-lowering drug will begin in to test efficacy of the huntingtin-lowering therapy
get these disease-modifying trials complete quickly.
2019 and will include sites in the U.S. RG6042. This will be a two-year study in people
The scientific breakthroughs of this past year give me
with early diagnosed HD. It will involve monthly lumbar
The study will be called the GENERATION-HD1 study.
hope that 2019 will bring generations of HD families
punctures (spinal injections) to deliver RG6042
The study name and Roche/Genentech team are inspired
a step closer to seeing the finish line.
or a placebo, as well as clinical tests and scans to
by HD families with the hope that “this will be the last
understand the effect of the drug on HD symptoms. Thank you for all you do!
generation to suffer” from the ravages of this hideous
Around 660 people age 25-65 will be recruited at
disease. News of this study has grabbed the attention of
approximately 90 sites across the world, including
the global HD community. While the light of hope now
20 sites in the U.S. (see list below) and six in Canada.
shines brighter for all of us, we must not lose sight that GEORGE YOHRLING, Ph.D. is HDSA’s
Senior Director of Mission and Scientific Affairs
much work remains before a finish line comes into sight. As I look back on 2018, I am overwhelmed by the
Expected Sites for GENERATION-HD1 Studies in the United States
ALABAMA, Birmingham CALIFORNIA, Pasadena ILLINOIS, Chicago NEW YORK, Amherst TEXAS, Houston
University of Alabama Arcadia Neurology Center Northwestern University Dent Institute University of Texas
Health Science Center
ARIZONA, Phoenix CALIFORNIA, San Diego MARYLAND, Baltimore NEW YORK, New York
Barrow Neurological Clinic University of California, San Diego John Hopkins University Columbia University UTAH, Salt Lake City
University of Utah
CALIFORNIA, Davis COLORADO, Englewood MASSACHUSETTS, Boston PENNSYLVANIA, Pittsburgh
University of California, Davis Rocky Mountain Movement Beth Israel Deaconess University of Pittsburgh WASHINGTON, Kirkland
Disorders Center Medical Center Medical Center Evergreen Health
CALIFORNIA, Palo Alto
Stanford University FLORIDA, Tampa MISSOURI, St. Louis TENNESSEE, Nashville WASHINGTON, D.C.
University of South Florida Washington University Vanderbilt University Georgetown University
Medical Center
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Advocacy Report Education Report
At Left: Segment
from the Module 1
BY JENNIFER SIMPSON, LCSW BY DEBRA LOVECKY, MS online course, ‘HD
in the 21st Century’
with Drs. Victor
Sung and Erin
Furr-Strimming.
With more than 30,000 e-advocates, 2018 was Health Council to fight against measures that would and fought successfully for increases to the NIH budget 2018 continued to be an outstanding year for ten workshops that can be viewed online at:
an active year for HD Advocacy! Our community have negatively impacted families with Huntington’s for neurodegenerative disease research. HDSA HDSA’s lay and professional educational efforts. In HDSA.org/convention
continued to focus our efforts on the HD Parity Act, disease. We fought against cuts to Medicare and focused on joining forces with partners to amplify the the area of lay education, HDSA was able to support
In the area of professional education, HDSA
working on gaining new co-sponsors while planting Medicaid, rollbacks of protections for individuals voice of our community and join the bigger fight to 49 field based educational days which included
travelled to Salt Lake City UT to conduct a day
the seeds for work in 2019. We partnered with the with pre-existing conditions, the creation of high-risk improve and protect access to healthcare as well as guest speakers at support groups as well as full
long training session on HD as part of the American
National Organization of Rare Disorders (NORD), pools which would have raised healthcare costs for expand resources for important research opportuni- and half day programs.
Occupational Therapy Association (AOTA)
the American Brain Coalition and the National folks with complex and chronic diseases like HD, ties for HD families. Although gridlock dominated In addition to out- neurologists and psychiatrists that featured ten of
pre-conference institute. Speakers included Sandra
Washington D.C. in 2018, HDSA and HD advocates standing programming our HDSA Centers of Excellence directors sharing
Kostyk, M.D., Ph.D., HDSA Center of Excellence
worked to make sure that we are still making prog- in the areas of both their knowledge and HD expertise in the areas of
at the Ohio State University; Lisa Warren, OTR/L,
ress towards improving the lives of individuals and care and research, every attendee received an diagnosis, treatment options and the benefits of a
HDSA Center of Excellence at the University of
families impacted by Huntington’s disease. HDSA information packet that contained valuable multidisciplinary team approach to care.
Florida; Jan Rowe, OTD, OTR/L, University of
materials about support groups, HDSA Centers of
In 2018 we also said goodbye to Alabama, Birmingham; K. Michelle Knewstep-Watkins, Over the past twelve months, more than 4,600
Excellence and chapters/affiliates in their region.
our long-time Washington insider OTD, OTR/L, Mary Baldwin University; Theresa medical professionals have taken one or more of the
More than 2,700 HD family members and health-
Jason Gromley. Jason worked with Berner, MOT, OTR/L, HDSA Center of Excellence at modules with more than 2,100 completing Module 1
care professionals attended these events with seven
HDSA and the HD community for Ohio State University; and Anne Leserman, LCSW (HD in the 21st Century with Victor Sung, M.D. and
multi-track state conventions attracting more than
7 ½ years advancing important from HDSA. Erin Furr-Stimming, M.D.), almost 1,400 completing
100 family members to each. HDSA thanks Teva for
legislation and regulatory Module 2 (Best Practices in HD: Role of the Multidis-
Since launching a four-part continuing education
their generous unrestricted educational grant which
initiatives to streamline access to Social Security ciplinary Team with Drs. Sandra Kostyk, Madaline
course in partnership with AOTA in 2016, almost
made these events possible.
Disability, Medicare and helped us forge important Harrison, Valerie Suski, Daniel Claassen, and
3,900 occupational therapists have registered for
relationships within the FDA to help them better In June, more than 1,000 HD family members Claudia Testa) and almost 1,500 completing
the course and AOTA has awarded almost 2,250
understand the needs of HD patients and their travelled to Los Angeles, CA to attend HDSA’s Module 3 (Best Practices in the Clinical
credits thus achieving HDSA’s goal of increasing
families. Although we will miss Jason, 33rd Annual Convention which honored and com- Management of HD with Drs. Sam Frank, Jee Bang
access to knowledgeable community based occupa-
we are excited to announce memorated HDSA’s 50 years of service to and Danny Bega). The course was made possible
tional therapists. HDSA will be partnering with
a new partnership with the HD community. In an through an unrestricted educational grant from
AOTA in 2019 to launch a new four-part course
Catherine Finley and inspiring keynote address Teva. HDSA is proud to have been a partner with
which will run for three years.
Thorn Run Partners, and on Friday, Anna Canoni, UAB and Medscape and to have had the opportunity
In late 2017, HDSA
look forward to continuing Woody Guthrie’s grand- to feature so many of our outstanding HDSA Center
partnered with
to make strides in 2019. daughter, recounted her of Excellence directors as part of the program.
Medscape and
family’s role in shaping the
the University of
course of care for families by
Alabama School of Medicine to produce an online
JENNIFER SIMPSON, LCSW is HDSA’s sharing stories and family photos of Marjorie and DEBRA LOVECKY, MS is HDSA’s
Senior Manager of Advocacy and Youth Programs. Woody. For those HD families who could not join us three-part accredited continuing education course Director of Educational Programs.
on HD for community based primary care providers,
in Los Angeles, HDSA also streamed and recorded
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Support & Services Report Youth Program Report
BY ANNE LESERMAN, LCSW BY JENNIFER SIMPSON, LCSW
HDSA is proud of the services that we provide to continues to person a Helpline (800-345-HDSA) health students, law enforcement personnel, assist 2018 was a banner year for youth programs! We cost to families, including travel and hotel stays for Program in 2018! With funding from the Griffin
families throughout the country. Social workers in for families and professionals and refers to the in educational day events, provide in-services to held four youth retreats across the country, bringing young people and their guardians. We look forward Foundation, HDSA onboarded and trained two
HDSA Centers of Excellence, chapters, regions and chapter and regional social workers who respond long term care facilities or other health agencies and in 84 young people and their guardians to to bringing in some new sites in 2019, stay tuned social workers within the HDSA network, Jessica
other HD clinics assist families in their 45 states to thousands of requests for information about HD, participate in NYA retreats. experience a weekend of community, to see when and where we’ll be in 2019! Marsolek and Katie Dykman, adding youth specific
and across their borders. Our professional training provide supportive counseling, answer questions education, laughter and healing. The work to their array of services provided to the HD
Many families find support and a listening ear The NYA also launched the Regional
brought 60 HD social workers together prior about genetic testing, long term care placement, National Youth Alliance (NYA) held community. This program hopes to build year over
at HDSA support groups that are available in 45 Lead Program. This program trained
to convention in Los Angeles. This in person disability and referrals to local resources. Social retreats in Pittsburgh, Des Moines, year to grow a network of youth social workers
states. Our on-line support groups continue to grow 21 young leaders to be resource hubs in
educational event helps HD social workers provide workers also interact with professionals in their New Orleans and Denver, partnering around the country, available to provide important
for caregivers, those at risk for HD, those early their areas, available to be a peer support
the best and up to date information on assisting HD communities doing presentations to medical with local chapters and HDSA supportive social work services to young people
in the course of their illness and parents caring for for young people, connecting to the local
families with their concerns. The national office students, genetic counseling students, behavioral Centers of Excellence to make sure impacted by HD.
children with HD. Groups help families understand social workers and Centers of Excellence
that our young people are getting the best
and normalize the symptoms that can occur in as well as working with chapters and affiliates
information available from experts in the HD
HD persons and benefits are felt both by caregivers to bolster local support for young people.
field. Sponsored by Teva, these retreats are at no JENNIFER SIMPSON, LCSW is HDSA’s
and HD persons. Individual counseling sessions are
We also launched our Youth Social Worker Pilot Senior Manager of Advocacy and Youth Programs.
also offered for free
through AmWell, a
telehealth program.
Many continue to
take advantage of
free counseling
sessions to get
assistance from
mental health
professionals
knowledgeable
about HD.
To find services in your area visit us online at:
HDSA.org/locateresources
ANNE LESERMAN, LCSW is HDSA’s
Assistant Director of Community Services.
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HDSA Leadership
HDSA Board of Trustees
E.J. Garner, Chair
Victor Sung, M.D., Chair-Elect
Daniel S. Vandivort, Treasurer
Jennifer Leyton, Secretary SAVE THE DATE!
Arik Johnson, Psy.D., Past-Chair
Join us for the 34th Annual HDSA Convention
Kamran Alam
in historic Boston at the Marriott Boston Copley Place.
Dan Brennan
JUNE 27-29, 2019, BOSTON, MA
Stacy Coen
Jenne Coler-Dark Register today at HDSA.org/convention
Gerald Francese, Esq.
Donald Higgins, M.D.
Bill Klein
Teresea Srajer
Leslie Thompson, Ph.D.
Vicky Wheelock, M.D.
HDSA Staff Leadership
Louise Vetter, President & Chief Executive Officer
HDSA’s Mission
George Yohrling, Ph.D., Senior Director of Mission & Scientific Affairs
To Improve the Lives of Everyone Affected by
Christopher Cosentino, Director of Marketing & Communications
Nancy Rhodes, Director of Field Development & Operations Huntington’s Disease and Their Families.
Jamison Skala, Director of Development
HDSA’s Vision
A World Free of Huntington’s Disease.
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