COLUMBUS, Ohio — Huntington's Disease is an inherited condition which causes nerve cells to break down in the brain over time.
“Anybody that I know that has this horrible disease, I just want it to stop. I just want it to end,” said Columbus HDSA Chapter Founder Paula Lintz.
- Huntington’s Disease is a fatal genetic disorder that causes a person to lose their physical and mental abilities
- Although the condition is rare, there is currently no cure
- More than 40,000 people across the country have HD, and more than 200,000 are in danger of inheriting the disease
What You Need To Know
For Paula Lintz, continuing the fight for a cure for the disease is both her passion and a personal mission.
Her granddaughter's mother, Katy Simon, was diagnosed with the disease and her only granddaughter Josephine has a 50/50 chance of one day inheriting the disease as well.
“I see what her mother is going through and I see what other people with Huntington's Disease have gone through and I can't let that happen to her. So that's my driving force, is my grandchild,” said Lintz.
Symptoms usually start between the ages of 30 and 50 and are described as similar to ALS, Parkinson's and Alzheimer's all at once.
Simon watched her own mother die from the disease. She knows what's coming. She is among only 41,000 symptomatic Americans living with Huntington's.
Since she was diagnosed 15 years ago, she's had problems walking and swallowing and developed involuntary movement in her face and limbs.
While Simon has participated in promising clinical trials locally that provided some relief, she says more awareness and research is needed for HD.
“It really frustrates me that there isn't so many people that know about it because it's such an awful disease. It might be brain surgery, it might be over-the-counter pills, it might be infusions and there needs to be like a cocktail that people take to you know be cured for HD,” said Simon.
Both Lintz and Simon are heavily involved with the Central Ohio Huntington's Disease Society of America.
The organization kicks off its fundraising season May 30 with a Virtual Team Hope Walk.
Their goal is to raise 15,000 for Huntington's Disease Awareness by October, when the organization hosts its 9th annual Team Hope 5k & Walk at Glacier Ridge Park in Plain City.
Both women are confident they will see a cure during their lifetime.
“The more money we can raise, the more awareness we can get out there. A cure for Huntington's disease is a cure for Parkinson's and Alzheimer's and all of those neurodegenerative diseases,” said Lintz.
“So It's just going to be a matter of the time that's spent. I think yes, it's going to happen,” said Simon.
For more information on the May 30 virtual race or the 5K event in October, visit the Huntington's Disease Society of America website.