May is Huntington's Disease Awareness Month

Wednesday, May 01, 2013

Huntington Disease Society of America Center of Excellence Booth

May is Huntington's Disease (HD) Awareness Month, and The University of Iowa Huntington's Disease Society of America (HDSA) Center of Excellence is working to raise awareness of this devastating neurological disease.

The center will have a display on Huntington's disease in the Fountain Lobby at University of Iowa Hospitals and Clinics on May 23, 2013, and staff from the center will be on hand to provide information and answer any questions about Huntington's disease from 11:30 a.m. to 1 p.m. Researchers and clinicians can help explain the disease and the advances being made because of people’s participation in clinical and observational trials, but the best way to explain the devastation of Huntington's disease is through the story of someone who has to confront its challenges on a daily basis. That’s why each day this month, the Huntington’s Disease Society of America is profiling a different person from an HD family, as well as clinicians and scientists, who are all truly faces of Huntington's disease.

As one of the leading Huntington's disease centers in the United States, the University of Iowa Huntington’s Disease Society of America Center of Excellence provides care and research opportunities to individuals with Huntington's disease from around the state, region, and country. The specialized care provided by our staff for such a rare and complex disease is something most patients and families simply cannot get where they live.

Huntington's disease is a devastating, hereditary, degenerative brain disorder. Huntington's disease slowly diminishes the individual’s ability to walk, think, talk, and reason. Eventually, the person with Huntington's disease becomes totally dependent upon others for his or her care. Huntington's disease profoundly affects the lives of entire families – emotionally, socially, and economically.

More than 30,000 people in the United States are currently diagnosed with Huntington's disease. Each of their siblings and children has a 50 percent risk of developing the disease; therefore at least 250,000 Americans are at risk of developing the disease. Though there is currently no cure for the disease, there are a number of encouraging studies currently underway, including several at the University of Iowa Huntington’s Disease Society of America Center of Excellence.

The Huntington’s Disease Society of America, a national non-profit health agency, provides vital support, information and educational services to improve the lives of those affected by Huntington's disease, offers resources and guidance for Huntington disease families through a national network of volunteer-based chapters and affiliates and support research to find a cure for Huntington's disease. The Huntington’s Disease Society of America also funds Centers of Excellence throughout the United States.

For more information on Huntington's disease, explore the following links: