ELLSWORTH — Mainers are raising awareness of a rare disease that reportedly affects tens of thousands of Americans.
” It’s not easy for the victim going through it and it’s not easy for the family to watch,” said Lisa Ashford.
The Maine Affiliate for the Huntington’s Disease Society of America hosted the Team Hope Walk at Ellsworth High School.
According to Nancy Patterson, the Maine affiliate chair for HDSA, the event was to raise funds for HDSA programs and to raise awareness about the fatal genetic disease.
” The Huntington’s disease society of America is there for support, for education, there are a lot of publications and webinars for physicians and anyone who’s involved in the care of a person who has Huntington’s disease,” said Patterson.
According to the HSDA, it is approximated that 41,000 people in the united states have Huntington’s disease and even more family members are affected by it.
Lori Wilcox, who describes herself as the voice of her brother DJ who is fighting the disease, says it's like Alzheimer’s, MS, ALS, and Parkinson’s all wrapped into one.
“It’s like you’re just watching him deteriorate and you can’t stop it. You can’t help him. There’s nothing you can do. That’s why it’s very important to do the walk for hope to donate what you can. Even donating your time,” said Wilcox
Lisa Ashford, a woman who has been diagnosed with Huntington’s disease, says one of the best things that people can do is show support by educating themselves and attending events like the hope walk.
"It’s awesome to see this many people and I was actually able to have a best friend and my son and his wife here today with us but seeing everybody turn out is it’s fabulous,” said Ashford.