About 35 mid-Missourians and ten dogs turned out for a weekend Columbia walk to raise money for a fatal disease that is described as having ALS, Parkinson’s and Alzheimer’s simultaneously.
Candace Rodman is the Columbia coordinator for the Huntington’s Disease Society of America (HDSA), and she helped organize the Hounds for Huntington’s walk at Twin Lakes recreation area. Rodman tells 939 the Eagle that Huntington’s is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.
“So you start seeing the symptoms in your 40s and you lose your motor control very slowly. You trip. It’s harder to walk, it’s harder to swallow, it’s harder to talk and your speech is slurred,” Rodman says.
There is no cure for Huntington’s disease. Rodman says there are currently 41,000 symptomatic Americans and another 200,000 who are at-risk of inheriting the disease.
Ms. Rodman says Huntington’s disease patients currently have a two-year waiting period for Medicare, after qualifying for Social Security disability insurance. She and her group are calling on Congress to pass bipartisan legislation from U.S. Sens. Kirsten Gillibrand (D-New York) and Bill Cassidy (R-Louisiana) to address that.
“And when you put that kind of waiting period on someone that has a fatal disease staring them in their face and they need that help immediately. And so that waiting period is too long,” Rodman tells 939 the Eagle.
Rodman says patients with Huntington’s may have two years or five or ten years, but it’s unknown. She thanks everyone who participated and donated this weekend.