Little-known “Huntington’s” Focus of Event

Story by Tabatha Duvall

Though Huntington’s Disease was thought to be rare, it has become one of the most diagnosed hereditary diseases. One out of every 10,000 Americans will be diagnosed with Huntington’s in their lifetime.

This genetic degenerative brain disorder does not skip generations, and 150,000 people are currently at risk of inheriting Huntington’s from a parent. If a person inherits the abnormal gene, they will develop the disease. There is no treatment and no cure or even a means of slowing down the progression of the symptoms which will eventually lead to death. The average progression of the disease is about 10 to 25 years.

Unless directly affected by this devastating disease, most people don’t know much about Huntington’s and if even if they do, they may not understand it well. JoAnn Carr of Dover and Cindy Hillyer of Clinton have made it a mission to change that.

In January they had both called the Huntington’s Disease Society of America because there was not much advocacy in the state of Arkansas. Hillyer’s brother is battling Huntington’s now and Carr has had five family members, including her mother and two brothers and their children, that have been diagnosed with the disease.

Carr says, “We want to see as many people know about Huntington’s as possible.”

Hillyer added, “My goal in life is to educate people about the disease and to let them know how they can help. We’re just trying to make a difference, one person at a time.”

They are working in connection with the Arkansan chapter of the Huntington’s Disease Society of America. HDSA was founded in 1968 by artist Woody Guthrie’s wife Marjorie, after he passed from the disease. She went to then president Jimmy Carter to lobby for more funding for neurological science research which eventually lead to HDSA. Since that point, the gene has been pinpointed and a test has been developed, but there is so much more to be done. Currently, symptoms of the disease can be treated and lessened but there is no cure for Huntington’s.

On September 29th, the Arkansas Affiliate of the Huntington’s Disease Society America is holding the first annual Walk, Raffle, and Roll on the campus of the Clinton Presidential Library in Little Rock. A short walk will begin at 10 am, and a silent auction with autographed sports memorabilia, massage packages, and condominium stays will be held.

Musicians Luke Williams, Victoria Taylor, and Jason Vaughn will be performing as well as magician Derek Rose. Barbeque will be served for lunch and a Kids’ Corner will be open for children to play.

Speakers will be Dr. Robert Griffin, the chief medical officer at Arkansas Blue Cross and Blue Shield, Dr. K. Morgan Sauer with St. Vincent’s Health System. They will also draw a raffle for a three night stay on a house boat on Lake DeGray sponsored by Anchors Away of Hot Springs.

To register for the walk, visit www. hdarkansas.org, or preregister at 8 a.m. on the day of the race. Carr and Hillyer are both selling raffle tickets. Carr can be reached at (479) 970-9409 and Hillyer at (501) 831-8452.

For more information about Huntington’s, call (800) 345-HDSA, or find the HDSA Arkansas Affiliate on Facebook under Huntington’s Disease: Arkansans for a Cure or on Twitter at www.twitter. com/ArkansasHD.

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