From a Sallies Grad...Glenn ONeill Hello Ursuline Alumni. My name is Glenn O’Neill and I am a Salesianum graduate (1990). My 4 year old daughter Eliza was recently diagnosed with Sanfilippo Syndrome – Type A, at terminal genetic disease with no cure and no treatment to slow it down. Her life expectancy is mid-teens or less. It is degenerative in nature and by age 6 there usually is significant brain damage. It is a parents worst nightmare and an unfair sentence on any child. There is HOPE in a clinical trial at Nationwide Children’s hospital in Ohio which has cured this disease in animal models. It is lacking funding to keep it on schedule. We are working with a 501c3 non-profit which is sending all funds directly to the trial, to cure this disease for ALL Sanfilippo children. Our first event for Awareness and fundraising in Delaware is December 19th at Chase Center Riverfront in Wilmington. I wanted to extend this invite to all. I have many Ursuline Alumni as Facebook friends, and many will be there that night. If you are able, please go to facebook/ElizaOStory for more information and “like” and “share” the page. There is an Events button which takes you to the ticket info for Dec 19, or on EventBrite, Wilmington DE, search “Eliza”. It would be great to have you there. Thank you from our hearts! The O’Neill’s
Posted on: Wed, 04 Dec 2013 20:18:26 +0000
Trending Topics
Recently Viewed Topics
© 2015