COLUMBIA STATION, Ohio — This weekend, you can help support families facing a devastating disease, and the inspirational woman leading the charge here at home just received national recognition.
Jesse Lis belongs in the spotlight for her courage and selfless work to help others. The Huntington's Disease Society of America recently named Lis their person of the year.
The Columbia Station mom is a tireless advocate for people with the fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. The symptoms of Huntington's Disease are often described as having ALS, Parkinson’s and Alzheimer’s simultaneously.
For Lis, the fight is personal.
Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. Lis has it and knows symptoms could start any day.
"HD is in my fate and I'm not going to stop until we have a cure, and we're so close," she's said.
Life is imitating art; Hollywood has put Huntington's Disease in the spotlight recently with two popular shows.
Huntington's Disease is mentioned in the first episode of The Old Man on FX.
It is also part of the storyline for a new character in season four of Virgin River on Netflix, which was one of the most-streamed shows in July.
Lis said more awareness like this can be a good thing for a disease with about 41,000 symptomatic Americans and more than 200,000 at risk of inheriting it, according to the Huntington's Disease Society of America.
Shaw said it's important to her that HD is accurately portrayed in TV shows and on screen.
To learn more about the signs and symptoms, resources, research and advocacy, click here.
As Lis said: They're close to a cure. Until then, she's sticking to the script of putting the spotlight on living, raising research dollars, and helping families connect with resources to cope with the devastating disease and diagnosis.
"I'm still in a position in my life where I can help others,” she said. “So, that's what I'm doing now – helping others.”
One way you can help is coming up. Lis is the president of the Northeast Ohio chapter of the Huntington's Disease Society of America which was just named the chapter of the year. On Sunday, August 7 they're hosting its annual Team Hope walk and 5k run. It is happening at the Cleveland Metroparks Zoo. Check-in is at 7 a.m., the run starts at 8 a.m. and the walk follows at 9 a.m.
Proceeds help HD families with caregivers and more. The NEO HDSA chapter also has a golf outing coming up in October and a gala in November. To learn more about their fundraisers, click here.