Honors Girl With Spinal Atrophy
Sophia’s Cure Foundation, a charity dedicated to finding a cure for Spinal Muscular Atrophy (SMA), a terminal and aggressive disease that affects young children, raised nearly $100,000 at a Long Island City fund-raiser in late August.
As noted, Sophia Gaynor was diagnosed in 2009 with Spinal Muscular Atrophy Type 1, a disease that ravages the body leading to acute paralysis and the need for respiratory support and a feeding tube.
Her parents, Vincent and Catherine Gaynor, launched Sophia’s Cure Foundation to raise money to find a cure for the disease. The 100 percent volunteer organization has raised nearly $2.5 million for SMA research in just three years.
There is no treatment or cure for SMA yet, but groundbreaking research, partially funded by Sophia’s Cure, is working on a potential cure so that future generations may not suffer from this heinous disease.
“We are humbled by the support of the Mechanical Contractors Association,
Steamfitters and other unions in the fight against SMA,” said Vincent Gaynor, a union steamfitter with Local 638. “More than 125 people attended the fundraiser and we are now planning to make it an annual event.”
Sophia Gaynor, who is totally paralyzed and cannot swallow or speak, is now 3 1/2 years old and earlier this month was the first child to enter the new Freedom Tower where her father Vincent is currently working, the family said. Children diagnosed with SMA Type 1 generally don’t live past two years of age and the disease affects approximately one in 6,000 children.
The Long Island City dinner honored Patrick Dolan, president of the Enterprise Association of Steamfit- ters Local 638 and Richard Roberts, business agent at large for Local 638. To date, they and others in the city’s steamfitting industry have helped raise nearly $2.5 million for a cure.
“Vincent and Catherine’s dedication to finding a cure for SMA is inspiring to everyone at Local 638,” said Dolan. “Sophia’s Cure Foundation is a great cause and we are committed to helping the Gaynor family and others in the battle against SMA.”
“The Gaynor family has shown so much dedication to raising money for SMA research and people afflicted with the disease,” added Roberts. “As steamfitters we believe in helping each other in times of need and we know that a cure for SMA is coming sooner rather than later.”
“The entire steamfitting industry is behind Sophia’s Cure,” said Tony Saporito, executive vice president of the Mechanical Contractors Association of New York. “SMA is a terrible disease and the people in the Steamfitting Industry will do whatever we can to find a cure”
For more information about Sophia’s Cure Foundation visit www.sophiascure.org.
