Dana Bradley

Imagine a child with severe neurodevelopmental delay. With uncontrolled seizures. With difficulty breathing. With constant urinary and respiratory tract infections. With an increased risk of developing cancer. With 24/7 level care needed.

I don’t have to imagine. I support families with children who have all these symptoms and many more as a Trustee with the Schinzel-Giedion Syndrome (SGS) Foundation (https://sgsfoundation.org). By chance, these children were born with SGS - a severe, life-limiting, neurodevelopmental and multi-systemic genetic disorder caused by mutations in the SETBP1 gene.

There is no cure and there are no specific treatments for SGS.

On Saturday, June 8th I’m riding in the University of Pennsylvania Orphan Disease Center’s Million Dollar Bike Ride. I’m riding to raise funds for research so we develop treatments that improve the quality of life for our kids and their families.

The SGS Foundation is partnering with the SETBP1 Society and our combined team name is SETBP1Strong. All funds raised will go to research focused on identifying the underlying disease mechanism or the development of potential therapies for SGS and SETBP1-HD. The Orphan Disease Center will match dollar for dollar all funds raised above $20,000 and up to $30,000.

Imagine how your donation can fund research for children with these ultra-rare disorders!!