Huntington's Disease Society of America: Help for Today, Hope for Tomorrow
By Louise Vetter, CEO
Special to The Movement Disorder Society
Forty-two years ago, Marjorie Guthrie, wife of American icon Woody Guthrie, sought out others, who like herself, were facing the challenges of Huntington's Disease (HD). Those who answered her newspaper ads would get together to discuss the problems they faced, and to determine how they would get help: to find a cure; to get the type of care needed as a loved one moved through the stages of the disease; and to make more people aware of Huntington's Disease.
Today, the organization that evolved from those initial meetings, the Huntington's Disease Society of America (HDSA), has grown to 40 Chapters and Affilliates throughout the United States, pursuing the same objectives: To find treatments and a cure for HD; to provide care for people with HD and their families; and to educate the general public as well as the medical world about Huntington's Disease. Over these past 42 years, HDSA has created programs specifically targeted to achieving these goals.
The foundation of the HDSA Research Program is the HDSA Coalition for the Cure, 16 world-class scientists who do "basic" research, to learn how the mutant huntingtin gene causes the symptoms of Huntington's Disease. Working in teams, these investigators have made most of the major breakthroughs in the understanding of Huntington's Disease.
To ensure that these discoveries are moved from the lab bench to potential therapies, our partner, CHDI, is a groundbreaking virtual translational pharmaceutical research entity, takes the "potential targets" that result from the basic research, and works to identify substances that could become treatments. When these substances are identified, and have been successfully tested in the lab, the third part of the pipeline, the Clinical Trials Group develops and manages tests to determine the safety and efficacy of a treatment, with the eventual goal of FDA approval.
In 2008 Xenazine, a treatment for chorea, was the first therapy approved by the FDA specifically for people with HD. There are currently many substances working their way through the HDSA Drug Discovery Pipeline, three of which are currently in Phase III clinical trials.
The challenge of providing care for a person with Huntington's Disease is a daunting one, as the symptoms manifest themselves in a variety of ways. Beyond the need for medical care, people with HD require psychological care, physical therapy, occupational therapy, help with speech and swallowing, and have family issues which necessitate genetic counseling and testing. To meet these needs, HDSA has created 21 HDSA Centers of Excellence at major medical facilities throughout the country, where people with HD and their families may receive this comprehensive scope of services. The Society also provides help for people with HD, family members and other caregivers through more than 200 support groups, hosted by the HDSA Centers of Excellence, Chapters and Affiliates.
In addition to its programs of research and care, HDSA focuses on providing the most up-to-date information about Huntington's Disease to the HD community, the medical community and the general public. HDSA's national website (www.hdsa.org) is the focal point for information on all HD-related topics: the latest research developments, fundraising and educational events, and available resources (medical, psychological, therapeutic, genetic, public assistance programs on the federal, state and local levels, support groups and more). In addition to these resources, every HDSA print or multi-media publication is available for download on the national website. Printed copies, CDs and DVDs are also available through the site.
The annual national convention, chapter and affiliate-run state and local conventions and educational events provide additional opportunities for interested parties to learn about different aspects of HD and engage as a community. The Society provides one-on-one support through a toll-free helpline at 800-345-HDSA and web support at www.hdsa.org.
HDSA's national headquarters are located in New York City, with regional offices spread throughout the United States. In addition to the 33 HDSA national and field staff members, hundreds of HDSA volunteers, following in the tradition of Marjorie Guthrie and her initial collaborators, make it possible for HDSA programs to grow and flourish.
Together, HDSA's staff and volunteers continue to provide Help for Today and Hope for Tomorrow to the 30,000 members of the HD community in America who are symptomatic, and the 250,000 who are at risk. Help us complete our mission to find a cure and provide the assistance our families need. Please visit www.hdsa.org or call 800-345-HDSA to learn more about how can help today.
About Louise Vetter
Ms. Vetter joined HDSA this March after a career at the American Lung Association of New York where she spent nine years leading the organization and advocating for families living with lung diseases, like lung cancer, asthma, cystic fibrosis, emphysema and more, to get the care and support they needed. Prior to the Lung association, Ms. Vetter led health education campaigns with emphasis on improving the patient-physician dialogue. At the heart of her experience is a firm passion for helping people face health challenges head on, always with dignity, understanding and hope.