Why We Run
In July of this year, Eliza O’Neill, (almost 4 years old) was diagnosed with Sanfilippo Syndrome-Type A (MPSIIIA), a rare terminal genetic disease. Her first years of life were typical. Only in the past year has she begun to show developmental delays. Children with Sanfilippo Syndrome are missing an essential enzyme for normal cellular function. This causes a build up of toxic material in their brain and body resulting in severe disability and death, typically before their early teens. Eliza is beginning to show signs of the disease in her learning and attention. By age 6 most children with her disease will have irreversible brain damage and lose the ability to speak. From there, her brain and body will continue to be ravaged. She will become wheelchair bound and have difficulty swallowing. Most children develop severe and difficult to control seizures. These devastating changes will happen with 100% certainty if no treatment comes in time. It is a parent’s worst nightmare and an unfair sentence for any innocent child.
A Gene Therapy clinical trial is scheduled for late 2014 for children specifically with Type A of this Syndrome. This treatment would save Eliza and stop this disease in its tracks. The gene therapy treatment has erased the disease in animal models and based on primate studies, all indications are that it will do the same for children. The trial, however, is lacking funding to remain on schedule. Every moment counts for Eliza and the many other children afflicted with this terrible disease. The clock is ticking. All Funds go to the O’Neill’s volunteer registered non-profit 501c3 called: Cure Sanfilippo Foundation – Eliza’s Story (Federal Tax ID 46-4322131) Currently we are funding this Gene Therapy trial at Nationwide Children’s Hospital in Columbus, Ohio. The total goal by mid 2014 to keep the Type A trial on schedule, in time for Eliza, is $2.5 Million.
Upcoming Events for Eliza
Feb 15, 2014- “The World’s Gonna Know Her Name” 5k
“The World’s Gonna Know Her Name” is a 5K (WALK or RUN) on February 15th to benefit Eliza O’Neill and Cure Sanfilippo Foundation.
The race will begin and end at USC’s Blatt PE center. Opening ceremony begins at 8:30AM, runners will start at 9am and walkers at 9:15am. Please register @ www.strictlyrunning.com.
Registration is $30 and will include a t-shirt
March 1, 2014- Eliza’s 9 Month Miracle 5k
When: Saturday, March 1, 2014
Where: Lake Carolina Harborside Village Green
Cost: $25 (includes t-shirt) Register by February 10th for a guaranteed shirt
Race Day Registration: 7:00-7:45am
Register at www.StrictlyRunning.com
Race Director: Kate Nelson email: email@example.com
March 30, 2014- Philadelphia Love Run
When: March 30, 2014 @ 8am
Join us for the first annual Philadelphia Love Run, a half marathon in downtown Philadelphia, PA. We are currently forming a team to do fundraising and raise awareness. Teams with more than 20 runners are allowed to have a tent near the finish line, and we are hoping to use this opportunity to share Eliza’s story. Team members are encouraged to fundraise on their own. Donations on a runner’s behalf can be made at the top of the page- be sure to earmark it as being for the Love Run.