Help for today. Hope for tomorrow.

The iowa connection

Website of the iowa Chapter of the Huntington’s Disease Society of America

Our Mission: We are committed to promoting and supporting research to find a cure, helping families and communities affected by this disease and educating the public and healthcare professionals about HD.

About the Huntington’s Disease Society of America

The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s Disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD in the United States.  Notably, HDSA funds the HDSA Coalition for the Cure, a collaboration of 16 international researchers, as part of the HD Drug Research Pipeline, which develops potential therapies to treat and eventually cure HD; and HDSA also supports 21 Centers of Excellence at major medical facilities throughout the U.S., where people with HD and their families receive comprehensive medical, psychological and social services, in addition to physical and occupational therapy and genetic testing and counseling. The Society is comprised of 38 local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA hosts more than 140 support groups for people with HD, their families, caregivers and people at-risk, and is the premiere resource on Huntington’s Disease for medical professionals and the general public.  To learn more about Huntington’s Disease and to get involved in HDSA, please visit www.hdsa.org or call 1-800-345-HDSA.

 

What is Huntington’s Disease?

Huntington's Disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period.  Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD.  Each of their siblings and children has a 50 percent risk of developing the disease.  Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.  

 

How do proceeds benefit HDSA?

All proceeds support HDSA’s efforts to provide help for today, hope for tomorrow for families affected by HD.

Volunteer abounded at the Burmeister/Eden Open at the beautiful Crestwood Hills Golf Course in Anita on Saturday, June 19. Check our Chapter Events page for more pictures.

The 3rd Annual Team Hope Walk For HD will be held September 18, 2010 at Des Moines Area Community College in Ankeny, Iowa. More information will be coming soon!