Local Members of Huntington’s Disease Society of America to meet and lobby Congress to pass Huntington’s Disease Parity Act

April 20 meeting will allow advocates to press Congressional representatives to sign on as sponsors of bill that would add those affected by the devastating disease

LAS VEGAS – On Friday, April 20, 25 local members of the Huntington’s Disease Society of America’s Las Vegas affiliate will convene to discuss and participate in training on how to advocate for the Huntington’s Disease Parity Act of 2011 (H.R. 718, S. 648), a bill in congress that is meant to improve access to Social Security Disability benefits and Medicare coverage for individuals with Huntington’s disease (HD).

Upon completion of the training, the advocates will meet with representatives from the offices of Sen. Dean Heller, Sen. Harry Reid, Congressman Joe Heck and Congresswoman Shelley Berkley, with the intent of convincing them to co-sponsor the Huntington’s Disease Parity Act.

HDSA advocates are determined to encourage Congress to dismantle the two-year waiting period between the acceptance of a disability claim and the ability to receive Medicare coverage for those with Huntington’s disease. Currently, patients are losing valuable medical coverage, and for some, their lives, as they wait for Medicare benefits to be made available.

Approximately 8,200 individuals and family members in Nevada are impacted by Huntington’s disease, having either been diagnosed themselves or having an immediate family member who has been diagnosed or is at risk for the 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 cure and only one FDA-approved treatment for a symptom of HD.

Training for advocates will take place from 8-11:30 a.m. at the Red Rock Hotel & Casino. From 1-3 p.m. participating advocates will meet with congressional representatives at the Historic 5th Street School – located at 401 S. Fourth St.

The recently chartered Las Vegas Affiliate of HDSA will host other events to help build awareness of Huntington’s disease in the area. On Saturday, May 12, they will host the second annual Team Hope Walk for HD at Town Square – located at 6605 Las Vegas Blvd. South, near Sunset Road. Registration begins at 9 a.m. and the walk starts at 10 a.m. Although registration is free, those who raise $25 or more will receive a Team Hope Walk T-shirt. Other activities include live music, games, face painting, booths with items for sale and a silent auction, which includes a signed guitar by music group Foster the People.

Additional information can be found at www.firstgiving.com/hdsa-scr/hdsa-las-vegas-team-hope-walk.

Later this summer, the National Huntington’s Disease Society of America will host its 27th Annual National Convention June 8-10 at the Red Rock Resort in Summerlin.

Currently, Huntington’s disease is a main focus of the Cleveland Clinic Lou Ruvo Center for Brain Health, illustrating the importance of the disease in the Las Vegas community.

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 and the 250,000 at-risk in the United States.  

Notably, HDSA founded the HDSA Coalition for the Cure, a collaboration of 16 international researchers, as part of the HD Drug Research Pipeline, and supports research which develops potential therapies to treat and eventually cure HD; HDSA also supports 21 Centers of Excellence at major medical facilities throughout the United States, 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 46 local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA hosts more than 160 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.

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