By Dan Fraley, a friend of the O’Neill family
Wilmington’s O’Neill family is on a mission: They created the Cure Sanfilippo Foundation in hopes of saving their nearly 6-year-old daughter, Eliza, and they’re holding a golf tournament this month to raise money for research.
Eliza was just three years old when she was diagnosed in 2013 with Sanfilippo Syndrome, a rapidly degenerative and terminal genetic disease with no treatment or cure. Wilmington native Glenn O’Neill, a Salesianum and University of Delaware graduate, and his wife, Cara, whom he met at college, learned that their little girl – who showed only minor delay at the time – would rapidly lose the ability to talk, walk, and even swallow. Her life expectancy would be in her teens and preceded by many years of severe disability and suffering.
Although devastated by this news, the O’Neills realized they needed to take action immediately. They formed the 501(c)3 nonprofit Cure Sanfilippo Foundation with the goal to fund urgent research to treat or cure Sanfilippo Syndrome for all children. The Foundation runs with a volunteer board and scientific advisers ensuring every net dollar goes to research.
The O’Neills found hope in cutting-edge gene therapy research that was underway at Nationwide Children’s Hospital in Columbus, Ohio. The program, however, lacked funding to go to human clinical trials. Glenn and Cara were told millions of dollars had to be raised in order for the clinical trial to be up and running. The clock was ticking.
Friends and family in Delaware began running fundraisers and sharing their story. Churches and schools joined the fight in this nonstop effort. Later in 2014, the O’Neill family and Cure Sanfilippo Foundation gained national and international attention with the release of the 3-minute “Saving Eliza” viral video. Sanfilippo Syndrome was suddenly covered by hundreds of media outlets including features on “The Today Show,” “The Doctors” TV show and in People Magazine. All of that awareness helped the Foundation raise more than $2.5 million to date, and it has all gone to research. The Foundation also provides ongoing support to newly diagnosed families of Sanfilippo children.
The O’Neills continue to receive strong support from friends and family throughout the Delaware and Philadelphia area. You may be having fries at the Charcoal Pit and notice a Saving Eliza bumper sticker. You could be at St. Anthony’s carnival and pick up a Saving Eliza flyer. You might see a Cure Sanfilippo Foundation poster at a Philadelphia Eagles tailgate. If you are lucky, you could be trick-or-treating on Riverview Avenue and receive Saving Eliza treats from Eliza’s charming grandparents, Dolores and Joe.
Now, more than two years since their fight began, thanks to all of these efforts, a clinical trial that could potentially save Eliza and many other children could be just months away. Glenn and Cara’s friends are pleased to announce that the 2nd Annual Cure Sanfilippo Golf Tournament will be held on Friday, Oct. 23. Please consider joining them at Deerfield Golf Course in Newark at 9 a.m., or please consider sponsorship opportunities as well. All of the details can be found at this link.