Voyaging Towards a Cure: A dad decides to raise donations during a long trek to the BWCA
A Hibbing dad is doing something unique to help his daughter.
Tony Fatticci is set to head out on Friday next week for a 17 day winter hike through the BWCA.
“The Boundary Waters is a place I enjoy. I love to winter camp up there. And if I’m going to do it, I might as well do it for a good cause,” he shared.
His cause is close to his heart. He’s raising money and awareness for STXBP1 disorders.
His five-year-old, Nina, has an STXBP1 mutation. She suffered from seizures and has some developmental delays. But she started kindergarten, and is making progress.
“She’s a peach. She’s a very happy kid. She’s saying phrases like, I want to go outside, and I want to watch Mickey Mouse,” he shared.
Fatticci said it’s a unique disorder. That’s part of the reason he launched this fundraiser called Voyaging Towards a Cure, with the help of the STXBP1 Foundation.
He’ll leave on the 27th from Crane Lake. Mild conditions are going to make for more difficult travel than he’d like. But he’s going to do his best.
There is no cure, but a the STXBP1 Foundation is a parent-led advocacy organization leading the charge for a cure.
The STXBP1 Foundation works to accelerate development of therapies and ultimately cure for STXBP1 disorders. They are a 501c3 non-profit, and all donations are tax deductible within the U.S.