Improving lives of people affected by Huntington's disease
Contributed by Louise Vetter, Chief Executive Officer
Huntington's Disease Society of America
Special to The Movement Disorder Society
December 2012/January 2013
With more than 30,000 Americans living symptomatically with Huntington’s disease and another 200,000 at risk, the mission of the Huntington’s Disease Society of America (HDSA)– to improve the lives of people affected by Huntington’s disease (HD) and their families – is an urgent priority.
Three hundred HDSA Annual Convention attendees congregate for a 7AM Team Hope Walk in June 2012.
Every day we strive to provide Help for Today and Hope for Tomorrow to the HD community and these objectives were addressed passionately and successfully in 2012.
HDSA’s focus on community services was never more evident as the organization grew to include 48 chapters and affiliates that provide local resources and support to people at risk, those diagnosed, caregivers and other family members and supporters facing this devastating disease. In addition to the crucial peer support that chapters and affiliates provide to people new to HD, the Society’s 40 local social workers and national social worker offer direct professional assistance to HD families. At present, HDSA sponsors more than 160 support groups throughout the country for people with HD, caregivers and young people in HD families.
Additionally, the 21 HDSA Centers of Excellence provide unparalleled team care for people with HD: neurologists, psychiatrists, speech and swallowing therapists, nutritionists, occupational and physical therapists and genetic counselors who develop a customized care program for a person, whether at risk (not having taken the genetic test for HD), or in early to late stages of HD. The Centers also provide guidance and counseling to local long-term care facilities and other health professionals in their area who may not have specific HD expertise.
Educating the HD community, medical professionals and the general public is another focus of HDSA. The national website, www.hdsa.org provides information on the cause and progression of HD, brochures and videos for caregivers, educators, law enforcement officials, and medical professionals – all available to download for free. The website also offers comprehensive listings of medical and non-medical resources that is updated regularly. HDSA also has a robust Caregivers Corner Webinar series on topics ranging for applying for social security to specific caregiving tasks. These webinars are archived on the national website and available on a 24/7 basis.
The HDSA Convention, held each June, is the cornerstone of our interpersonal educational events and the 27th Annual Convention in Las Vegas in 2012 had more than 900 family attendees. Video streaming brought its content to an additional 1,300 individuals around the globe, and more than 20 local educational events, often joint endeavors between Chapters and HDSA Centers of Excellence, provided opportunities throughout the year for HD families to learn about new developments in research, new community services and speak with scientists, clinicians and social service experts in person.
As there is a shortage of physicians who have treated people with HD, HDSA continued to expand its outreach and educational offerings to doctors this year. A new edition of The Physician’s Guide to the Management of Huntington’s Disease was published and a 10-part CME on Huntington’s disease was created and made available for free online so that physicians may learn about all aspects of HD, and have up-to-date references when they see a person with HD.
In 2012 HDSA took on the task of creating initiatives to develop best practices and guidelines in two areas of HD care that are not sufficiently understood or codified. Working groups on Juvenile HD – a form of the disease seen as young as two years of age, and Long Term Care—an issue exacerbated by the fact that many people with HD need the comprehensive services of a facility from a relatively young age. Both groups, comprised of the top experts on these subjects, met and created plans of work that will lead to comprehensive guidelines and recommendations in 2013.
This has also been a banner year for HDSA’s advocacy efforts. Both Adult and Juvenile-onset HD will have been added to the Social Security Administration’s Compassionate Allowance List by the end of this year, a great victory for HD families who often face years of rejection and reapplication for SSA benefits. The HD Parity Act which calls for the Social Security Administration to update the criteria used to determine eligibility for disability for Huntington's disease and request the 24 month waiting period currently in place (once disability is approved) be waived was introduced in both the Senate (12 co-sponsors) and the House (145 co-sponsors). HDSA volunteer advocates continue to press for its passage, making visits to their elected official’s home offices during the holiday season.
Looking to the future, HDSA developed a new Five-Year Strategic Plan in 2012, with community input at both the outset of the process and through a request for comments on the completed draft before it was finalized. The Plan outlines direction for the Society and defines goals to be met to further achieve our mission. A major element of this Plan is the new HDSA Research Program, which will focus on a unique synthesis of translational and clinical research, utilizing the HDSA Centers of Excellence and relationships with basic scientists forged through the HDSA Coalition for the Cure. The innovative design of the program has already attracted attention among the field.
HDSA has remained active as a charter supporter and participant in the NINDS Induced Pluripotent Stem Cell Consortium, which has created 47 unique lines of HD stem cells. The HD team has already published in peer-reviewed journals results that demonstrate these cells can be used to create human neuronal cells, which show promise as an agent to accelerate the development of future therapeutics and clinical trials.
As potential therapeutics have moved through the drug development pipeline toward clinical trials, HDSA continued to provide information and education to families so that potential trial participants know about clinical and study trial opportunities and have the details to make an informed decision as to whether or not they wish to participate. The Society regularly meets with pharmaceutical and biotechnology companies with potential therapies, to consult on developing trial protocols that are family-friendly and accessible to ensure that the recruitment process will be completed in a timely fashion.
In addition to email blasts and articles on the national website, HDTrials.org offers an opportunity for people to register to receive clinical study and trial notices directly. Registration only requires an email address and a zip code, so they may maintain anonymity (if they wish), and they can receive notifications as soon as opportunities arise. HDSA senior staff are members of management committees of the new international observational trial, Enroll-HD, contributing to its design, its materials, and the recruitment process, thereby ensuring the family voice in its execution
The community services that provide the Help for Today, and the strategic plan, research programs and educational effortsthat provide Hope for Tomorrow require financial support. In 2012 HDSA’s signature fundraising campaign, Team Hope Walk for HD grew to more than 80 events. Celebrations of Hope, Hoop-a-thons and a wide variety of other events, from golf outings to lawnmower races all helped HDSA development efforts maintain and expand its programs and services.
In 2013 HDSA will continue to expand its community services with new initiatives addressing genetic testing guidelines, best practices for talking to young members of HD families about Huntington’s and recommendations on Advanced Directives. An expansion of the regional social worker program, a two-year review and upgrade of the Centers of Excellence program, the translation of more publications (including the Physicians Guide) into Spanish, as well as the awarding of the first wave of grants for the new HDSA research program ensure that HDSA will continue to provide Help for Today, Hope for Tomorrow to everyone affected by HD.
Please visit www.hdsa.org or write to email@example.com for more information on HD and HDSA. The fight against HD is community-wide and rooted in the passion of our families and with treatments on the horizon we have never been more excited to make HD history!
About Louise Vetter
Louise Vetter is the Chief Executive Officer of the Huntington’s Disease Society of America, the largest not-for-profit organization devoted to fighting Huntington’s disease. Since joining HDSA in 2009, she has led the expansion of the Society’s reach with new programs to strengthen support for the HD community, advocate for better access to care for those affected by the disease, improve physician understanding of HD, and support research to bring new treatments to HD families.
Ms. Vetter serves as Secretary of the International Huntington’s Association and is a member of the Board of Directors of the American Brain Coalition. Additionally, she is an active member of the National Health Council.