Cousin revives musical fundraiser for Sturge-Weber Foundation
After a decade hiatus, a new generation is reviving a Liberty family’s fundraiser that helped sustain a fledgling foundation for children with a rare neurological disease.
The Hartnett family has raised more than $100,000 at 12 annual fundraisers for the Sturge-Weber Foundation in honor of their cousin and nephew Danny Keffer, 27, formerly of Liberty, who was born with Sturge-Weber. One in every 50,000 babies is diagnosed with the syndrome, which causes brain impairment and seizures and is accompanied by a port-wine-colored birthmark on the face.
Danny is legally blind, functions at the age of a toddler and has about 10 seizures daily. He was four when the first fundraiser was conducted in 1987.
“He’s never spoken a word in his life, but he (Danny) has been the one that has pulled our family together like nobody else could,” said Danny’s mom, Kathy Capozzoli, 54. “I was afraid we would lose all that after the last fundraiser.”
For three years she organized the fundraiser long distance from Harbeson, Del., but that became too difficult to manage. Eleven years later, Julie Zanetti, 29, of Elizabeth, Danny’s cousin, decided to take on the challenge.
“As a child I remember saying, ‘I want to plan one of these,’ ” she said. She told Capozzoli of her plans shortly after Christmas.
“Just to see her face, all the hard work that I knew was coming, it made it worth it,” Zanetti said.
She hopes to raise at least $5,000 for the foundation, which provides support and resources for families with a child with Sturge-Weber.
Capozzoli said she’s touched by her family’s renewed effort to help fund the foundation because it was such a godsend for her.
“I went from fighting this battle alone to having somebody else who knew exactly what I was talking about and what we were going through,” she said. She regularly talks with new foundation members to share her experience.
Karen Ball, Sturge-Weber Foundation president and CEO, said without the Hartnetts’ and a Texas woman’s fundraisers the foundation wouldn’t have become the national organization it is today. She will be in town for Saturday’s fundraiser.
“Still to this day I’m indebted to them,” Ball said.
Benefit this weekend
What : Hartnett Family Benefit for Sturge-Weber Foundation
When : 7 p.m. Saturday
Where : Liberty Borough Fire Hall, 900 Haslage St., McKeesport
Cost : $10 per ticket