By Katie Ussin
CLEVELAND — There is promising new research out of Cleveland that’s giving hope to people around the world who are facing a terrifying future.
Jesse Lis lost her dad, Michael, in April of 2020. He was 64.
More painful, she says, was watching him die for more than a decade from Huntington’s Disease.
“It is so scary to watch someone who was so perfect your whole life to deteriorate to nothing, to someone who's unable to walk, talk or even reason,” said Lis. “That's a really hard blow.”
Another heavy blow is realizing it'll happen to you, too.
Huntington’s Disease is a fatal, progressive brain disease often described as having ALS, Parkinson's and Alzheimer's all at the same time.
It is genetic. A child of a parent with Huntington’s has a 50/50 chance of inheriting the faulty gene. Jesse and her family did genetic testing after her father’s diagnosis in 2008 and discovered the disease was pervasive in their family tree.
Jesse has it and knows the cruel fate that awaits. She is 40 years old—in the prime of her life — right when it usually hits.
“Every day I wake up and think, 'Is today the day that I'm going to trip and fall?' or 'Is today the day where I won't remember something really important?'"
It is a lot to cope with, but Jesse fights to stay positive and works hard to raise money and awareness as the president of the Northeast Ohio chapter of the Huntington’s Disease Society.
“I am one of those people who isn't going to stop until I can save others and until I can save my family,” she said.
Right now, there is no treatment to prevent or slow Huntington’s Disease, but new research at Case Western Reserve University could help change that.
This really surprised us when we saw the data,” said Dr. Xin Qi.
Xin Qi and her team just discovered a potential breakthrough in how to prevent and slow the neuron degeneration that causes Huntington’s disease. She says this treatment is safer and more targeted than previous therapies. It is early, she cautions and says more research and clinical trials are still needed.
“If our strategy demonstrates to be useful and safe to patients, I will say best of luck, within five years we may make some breakthrough,” she said.
With an estimated 41,000 Americans being symptomatic, and 200,000 at-risk of inheriting Huntington’s, according to the Huntington Disease Society, the findings offer hope that families like Jesse’s are desperate for.
“It’s not fair that a fatal brain diagnosis should impact every generation,” she said. “It's just not fair.”
You are invited to help these families. The Team Hope Walk is Sunday, Aug. 15 at the Cleveland Metroparks Zoo. Registration starts at 7 a.m. The 5k starts at 8:30 a.m. and the walk starts at 9 a.m.
The money raised helps pay for social workers for families and also helps fund research for a cure and treatments.