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Spotlight on Huntington's Disease Society of America

APRIL 27, 2016
The Huntington’s Disease Society of America (HDSA) is the nation’s leading nonprofit agency dedicated to serve those with Huntington’s disease (HD). Through its educational programs, advocacy, research support, and community services, HDSA aims to improve the lives of those with HD.

About Huntington’s disease

HD is a devastating neurological disease that first causes symptoms in midlife. Over a decade or two, the disease causes personality changes, depression, poor judgment, unsteady gait and involuntary movements, slurred speech, and difficulty swallowing. Eventually the affected individual dies from pneumonia or other complications. At this time, there is no treatment available to stop the disease progression.
 
HD is caused by a mutation in the HTT gene, which provides instructions for a protein called huntingtin. This protein plays a role in the brain nerve cells, but its exact function is not known. Each child of a parent with HD has a 50% chance of inheriting the affected gene, which ultimately leads to HD.
 
In the US, there are currently about 30,000 people affected by the disease. There are more than 200,000 who are at risk of inheriting it. Though genetic tests are available for HD, some people choose not to get tested.

About HDSA

After the folk singer Woody Guthrie died of HD in 1967, his widow, Marjorie Guthrie, began reaching out to other families dealing with the disease. This was the early beginnings of what would later become HDSA. Since that beginning, the organization has developed a drug-discovery program and a national network of resources and referrals available to HD patients.
 
Headquartered in New York City, HDSA currently has 54 chapters and affiliates across the country. These groups support the many grassroots funding and awareness initiatives to support HDSA and its mission. This includes the Team Hope Walks, which have raised over $4 million for HDSA in walks in over 100 different cities.
 
HDSA is a longstanding global leader in HD research. Since 1999, the organization has funded over $18 million in developing treatments to slow or stop the disease progression. Work funded by HDSA has brought about key discoveries in understanding the disease. HDSA now supports a variety of research initiatives to answer key questions about the biology of HD.

 Upcoming Conference

The 31st Annual HDSA Convention will take place in Baltimore, MD, June 2-4. The convention brings together researchers, clinicians, and those living with HD. HDSA also provides extensive information about updates in HD research.

 Centers of Excellence

The HDSA Centers for Excellence are world class facilities that bring together a variety of medical professionals with extensive experience dealing with HD and supporting families. Currently there are 39 centers across the US. Individuals receiving care at these centers know that they will receive the best multidisciplinary care possible.
 
Connecting with other families is a key part of managing HD. Support groups are available through the local HDSA chapters and affiliates, as well as through the HDSA Centers for Excellence. The groups provide guidance when dealing with the challenges of living with  HD. Groups are available for people with HD as well as for family members and friends.

Legislative matters

HDSA is also active in advocating for HD patients through legislations. The HD Parity Act (HR 842/ S 968) is aimed at improving access to Social Security Disability benefits and Medicare coverage for individuals with HD. Currently more than half of the House of Representatives are co-sponsors of the bill, and 19 bipartisan senators are active supporters. HDSA encourages individuals to send messages to their senators and representatives to support the bill.
 
Dealing with a diagnosis of HD is incredibly challenging, but HDSA is here to provide support. Through its many projects, it is giving “help for today and hope for tomorrow.”

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