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By Hayden Ristevski
LOUISVILLE, Ky. (WDRB) -- Members of the community were raising awareness about Huntington's Disease Sunday, as an important piece of federal legislation makes its way through Congress.
The Kentucky chapter of the Huntington's Disease Society of America hosted its annual Team Hope Walk fundraiser at Waterfront Park.
Courtney Bennett was about 11 years old old when her mom was diagnosed with Huntington's Disease.
"I always say we lost our mom when we were kids and then we lost her again when we were young adults," Bennett said. "We lost her in the physical capabilities of walking, talking, ease of eating and then emotional mentally being able to keep up with conversation."
Her mother died after battling the rare disease for nearly two decades.
"It is very rapidly progressive," Liz Ulanowski said.
Ulanowski is the president of HDSA's Kentucky chapter, and says parents with Huntington's have a 50-50 chance of passing it down to their children. In Bennett's case, she tested negative for the gene.
Huntington's often hits during a person's prime working years.
"Typically folks are diagnosed or become symptomatic in the thirties or forties so it kind of strikes... when they're still working," Ulanowski said.
Sunday's Team Hope walk was raising awareness about the disease at a time when the pressure is on. The Huntington's Disease Parity Act was reintroduced to congress in May and was referred to the House Ways and Means committee.
"It's going to greatly impact a number of people who are in desperate need of it," Bennett said.
This bill waives the 24-month waiting period for Medicare coverage for people diagnosed with the disease. Advocates say this is crucial, since it's so difficult to work as the disease progresses.
"It will greatly impact families because they can't work or because they're losing the jobs that they have so we need get help to them sooner," Bennett said.
The money raised at the event goes to fund initiatives of the national the Huntington Disease Society of America.
"There is lots of research going on for gene modifying drugs to help delay so it's a super exciting time for our patients and families right now," Ulanowski said."We are so close to a cure and we are so close to figure out how to improve the lives of the people that have been diagnosed."
For more information about the Huntington's Disease Society of America click here