CITY OF TONAWANDA, N.Y. — For our Most Buffalo Story of the Day, we are previewing the Team Hope Walk that's happening next month. It brings awareness to Huntington's Disease, a fatal genetic disorder impacting thousands of Americans.
"It's usually described as a combination of Alzheimer's, Parkinson's, and ALS all at once. It's a genetic disorder that is dominant, so if one parent has it, the children have a 50/50 chance of acquiring the disease," said Andrew Stammworthy, local chairperson for the Team Hope Walk in WNY.
Huntington's Disease is a neurodegenerative disease, and a lot of people who have it don't know until they start showing symptoms.
"It's different for everyone. It usually manifests later in life starting with usually motor dysfunction, shaking, and fidgeting, and things like that, and then cognitive issues after that similar to Alzheimer's," Stammworthy said.
Stammworthy is the local chairperson for this year's Team Hope Walk. It's being put on by the Huntington's Disease Society of America next month, and for Stammworthy, it's personal.
"My wife, Corina, she is HD positive. Her father has Huntington's. He has manifest, so he is showing symptoms, and my wife is gene positive so she is not showing symptoms yet, but she will soon, and so we started participating in the HDSA walk to help raise awareness once we found out that it ran in her family," Stammworthy said.
"It definitely was a gut punch to learn that that was, you know, what was going on with her father."
Stammworthy shared with 2 On Your Side that Huntington's can hit at any point in life depending on a person's genes, and it can easily be misdiagnosed.
"A lot of doctors might misdiagnose Huntington's because it has to many similar symptoms to other diseases, and that's why raising awareness of Huntington's is extremely important, and that's one of the things that the walk and HDSA is trying to do is make more people aware of the disease and what to look out for," Stammworthy said.
There isn't any cure, but the Team Hope Walk helps to fund research. It's Sunday, Sept. 15. Registration starts at noon at the pavilion at Niawanda Park. Last year, this walk raised about $20,000. They're expecting to raise about $30,000 this year.
"Of course people don't have to do the walk if they come to participate. They can take part in the basket raffles, and the snacks, and things, and just learn more about Huntington's, or just donate their time, and energy, and finances to help a good cause," Stammworthy said.