Blue Hens to appear on 'Today Show' June 17
11:57 p.m., June 14, 2014--University of Delaware alumni Glenn and Cara O'Neill are scheduled to appear on NBC's Today Show on Tuesday, June 17, talking about their crowdfunding efforts to support research on a disease their daughter, Eliza, has.
The Double Dels have broken a record by raising $1.3 million through Gofundme.com for research to start clinical trials in the race to find a cure for Sanfilippo Syndrome.
Inside a superstorm
According to the Saving Eliza website, Eliza, age 4, was diagnosed last July with a rare terminal genetic disease, Sanfilippo Syndrome-Type A. Children with this disease are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brains and bodies, leading to severe disability and death.
The O'Neillls are racing the clock to raise the money to fund a gene therapy trial scheduled for late 2014 that is specifically for children with Sanfilippo Syndrome. Research points to this clinical trial being the answer to stopping the disease, but the trial is lacking funding to make the medicine, administer the treatment and remain on schedule.
Glenn and Cara O'Neill both graduated from UD in 1997, Cara with a degree in biological sciences and Glenn with a degree business administration, marketing. She is now a pediatrician for special needs children, and he works in procurement counseling.