Parents dedicate efforts to ‘Saving Eliza’
ALUMNI | Glenn, BE98, and Cara, AS97, O’Neill have received widespread attention this year, setting a record for crowdfunding to support a foundation they established and appearing in national media including an interview on NBC’s Today Show in June. It’s all part of their efforts to find a cure for a rare, deadly genetic disease affecting their 4-year-old daughter.
“We didn’t expect all this attention, but as a parent, when your child’s life is at stake, you just have to keep pushing ahead,” Glenn O’Neill said recently. “I had never heard of Sanfilippo Syndrome—no one I talk to has ever heard of it—but when Eliza was diagnosed, my wife and I jumped right into learning about it and trying to do something.”
The O’Neills are racing the clock to raise the money to fund a gene therapy trial, originally scheduled for late 2014. Using Gofundme.com, they showed a three-minute video, “Saving Eliza,” they had recorded and asked for help, eventually raising some $1.5 million to support the manufacture of medications for the clinical trial. They are continuing to raise funds for their Cure Sanfilippo Foundation so that the trial can go forward. Approvals from the U.S. Food and Drug Administration also are needed.
“We don’t know if Eliza will be able to be part of the trial [which will focus on children whose disease has progressed only to a certain point], but we’re in this for the long haul to help all kids,” Glenn O’Neill said in a September interview.
Cara O’Neill is a pediatrician for special needs children, and Glenn works in procurement. They live in South Carolina.
