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Fundraiser for victims of Huntington's disease upcoming

August 18, 2013
By MARK J. MILLER - For The Weirton Daily Times (mmiller@heraldstaronline.com) , Weirton Daily Times

TORONTO -Medical experts agree Huntington's disease has a 100 percent fatality rate.

Although the disease is always terminal, the genetically based disease also is extremely rare, which has led to little funding for research into a cure. Kathy Scheel, mother of the late Mandi Welday, wants to see that change, and her family is hosting a fundraiser in her daughter's memory. Her daughter died of the disease in April 2011.

The fundraiser is set from noon to 4 p.m. on Aug. 25 at the Stratton Municipal Building Hall, 136 Second Ave., with all funds raised going toward the Huntington's Disease Society of America. Admission is $8 for adults, $4 for children ages 4-10 and free for children under 3, according to Scheel's brother, Bill Scheel.

"We will have spaghetti, meatballs, salad, bread, desserts and beverages," said Bill, adding dining at the hall or carry-out is available.

The effort is being organized by Team Mandi. Kathy said her daughter left two children behind when she succumbed to the disease at age 30.

"Huntington's disease is an inherited, neurological disease," said Kathy. "(Mandi) was diagnosed in April of 2008. Her father had the disease.

"Each child of a person with Huntington's disease has a 50/50 chance of inheriting the disease," she continued. "Mandi was in the unlucky 50 percent. If you have the gene you will develop the disease. Right now 30,000 (Americans) have the disease, and 250,000 people are at risk. (Mandi) now has two daughters that are at risk."

Kathy said the fact the disease is rare means less funding for research into a cure.

"The only well-known person that's ever had the disease is (folk icon) Woody Guthrie," Kathy said. "It causes dementia. (Those with Huntington's) lose their ability to talk, swallow and walk. The problem is there aren't enough people with the disease to raise enough funding (for a cure). Our goal is to raise awareness and funds for research."

Other activities at the event will include a Chinese auction, a 50/50 drawing and drawing for a 50-inch LCD TV.

For take-out the day of the event, call (740) 537-2961. Tickets are available at the door. Donations also can be directed to an account in Mandi's name at the Toronto branch of U.S. Bank. For information, go to www.facebook.com/teammandi12.

(Miller can be contacted at mmiller@heraldstaronline.com)

 
 

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