By Alexis Oatman
CLEVELAND, Ohio-- Jesse Lis was just 28 years old when her world came crashing down after her father, Michael Phillips, was diagnosed with Huntington’s Disease in 2008.
“It was unbelievably painful,” Lis said.
The Columbia Station native, 41, said her father was 52 years old and “in the prime of his life” when he received the crushing diagnosis.
Initially, she and her family thought her father might have been suffering some unrelated behavioral issues. They were shocked when the test results were finally revealed.
“It’s super emotional,” Lis said. “You have someone in your life who is, for lack of a better word, ‘normal’ your entire life, and then all of a sudden, they have major characteristic changes. You’re watching your parent decline.”
After the family had learned about the diagnosis, Lis said there was a lot of hope in the beginning. But that was quickly cut short after discovering over 70 of her family members tested positive for the gene, including her and her sister. And if it couldn’t get any worse, the rare disease has no cure.
“It completely rips through your family tree,” Lis said.
Lis said she watched her father lose everything after his diagnosis -- his business, his family, and his livelihood. He passed away in 2020.
Huntington’s disease is a fatal genetic disorder that leads to the progressive breakdown of nerve cells in the brain, causing the deterioration of physical and mental abilities. Over 41,000 Americans are currently impacted by the rare disease, according to the Huntington’s Disease Society of America.
Every child of a parent with Huntington’s Disease has a 50/50 chance of inheriting the faulty gene.
The symptoms have been compared to having ALS, Parkinson’s, and Alzheimer’s – simultaneously. Symptomatic people may experience mood swings, irritability, delusions, and other cognitive and behavioral changes.
After equipping herself with some basic knowledge about the disease, Lis and her sister decided to join the Northeast Ohio chapter of the national Huntington’s Disease Society of America organization in 2008.
For the past six years, Lis has been the chapter president of the non-profit organization. She was recently named the ‘Person of The Year’ at the 37th annual Huntington’s Disease Society of America convention in Atlanta earlier this month.
Since 2016, Lis has led the local organization in hosting several galas, golf outings, education days, and other events throughout the year to help raise funds to send to the national organization for research, potential treatments, providing social workers for the community, and, ultimately, a cure.
“It’s so humbling, and I’m so honored,” Lis said.
One of the organization’s biggest attractions is the annual Cleveland Team Hope Walk & 5K Run.
Since 2007, thousands of families, friends, co-workers, neighbors, and communities have walked together to support the national organization’s mission to improve the lives of people affected by Huntington’s Disease and their families.
This year’s event will be on Sunday, August 7th at 8:00 AM at Cleveland Metroparks Zoo.
Despite having not yet experienced any symptoms, Lis noted that as time passes, she fears what the next two to five years will look like for her.
Once the decline starts, it happens rather quickly, she said.
Lis said she plans to use the time she has left to support her family and continue working with the Huntington’s Disease Society of America to aid with fundraising efforts. She said there is much work to do and that the fundraising efforts are never enough because there still is no cure.
In the Huntington’s Disease community, Lis mentioned there is a common saying: “Huntington’s Disease is the most curable, incurable disease.”
“What that means to me is that we’re so close to having something, and we must do everything we can to bridge the gap,” Lis said.