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Meet Eliza O'Neill
Last July, 4-year-old Eliza O'Neill was diagnosed with a rare terminal genetic disease called Sanfilippo Syndrome-Type A. In one terrifying instant, her parents were told that they would have to watch her fade away before their eyes.
Children with this rare disease are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brain and body leading to severe disability and death before they even reach their teens. This disease affects both genders, all races, all countries and continents. It is everywhere and the world needs to know.
By age 6, most children with her disease have irreversible brain damage and lose the ability to speak. As the disease continues to tear through her brain and body, she will lose the ability to walk and eventually she won’t even be able to feed herself as seizures ravage her body. These devastating changes are a 100% certainty if she doesn't get treated, and soon. It is a parent’s worst nightmare, and an unfair sentence for any innocent child.
But there is hope! There is a gene therapy trial scheduled for late 2014 that is specifically for children with Sanfilippo Syndrome. This treatment would save Eliza and literally stop this disease in its tracks overnight!
The research conducted points to this clinical trial being the answer to stopping this disease, which means the only thing standing between Eliza and her miracle, is money. The trial is lacking funding to make the medicine, administer the treatment, and remain on schedule, and every moment counts as Eliza approaches the tipping point when her disease will take an irreversible turn for the worst.
What would you do if you knew that money was the only thing standing between your child and their chance at a full and happy life? What would any parent do? You would fight for your child and raise the funds.
Team Ride to Give and our 8 member Ironman Lake Placid team are joining forces to help raise the almost $2.5 Million dollars that stands between Eliza and a cure for Sanfilippo Syndrome. Already her parents have raised nearly $600,000 for the research team and we hope to add at least $10,000 to those funds. Our team will be competing Sunday, July 27.
She and many others like her are counting on us to donate to the cause and share Eliza's Story so that they can have a chance to leave their mark in this world… The clock is ticking.
Meet Ride to Give's Ironman Team for "Eliza's Story":
- Gravity Goldberg is an educational consultant, writer, yoga teacher, and triathlete. She learned to swim as an adult, likes to bike hills, and loves to run. Lake Placid will be her third Ironman distance race.
- Donna Conciatori is an Ultrasound Technologist and single mother of two. She has completed several triathlons including two 70.3 ironman distances. Ironman Lake Placid will be her first full-distance Ironman.
- Candice Lester is an HR Business Partner with Mercedes-Benz. She started training for triathlons and marathons in 2009. She has completed three half Ironman, 4 marathons, and dozens of other races. Lake Placid will be will be her first Ironman.
- Mitch Pollack is an attorney with offices in Tarrytown, NY and Mahwah, NJ. He is also an avid endurance athlete having competed in numerous marathons, triathlons and other races. Lake Placid will be his second Ironman distance race.
- Antonia Noonan, who is a wife/mother/yoga teacher/fitness instructor/sometimes personal trainer, loves to swim, bike, and run in her “spare” time. In 2008, she got involved in triathlon on a dare, and hasn’t looked back. IMLP 2014 will be her third Ironman, and she couldn’t be happier than to be taking her body 140.6 miles as a part of Team Ride to Give.
- Kate Tormey grew up cycling the roadways of Eastern Long Island with her dad, who's passion was cycling. Having taken up running in 2005 and triathlon in 2007, IronMan Lake Placid marks Kate's second iron-distance event. She is excited and honored to be a part of Team Ride To Give’s Ironman 2014 season.
- Angie Fifer is a Sport Psychologist for Army Athletics where she teaches athletes to create a rock solid confidence, focus on the right things, and compensate and adjust to adversity. She is a former gymnast, current marathon runner, and new to triathlon. Ironman Lake Placid will be her 2nd Ironman.
- Jo-Ana Quirch is an engineering project manager with Siemens Healthcare DX. She started participating in road races two years ago after joining a boot camp class to get in shape. Since last year she has completed a marathon, the swim across the Hudson, and several triathlons including an olympic and a half ironman. Lake Placid will be her first ironman distance race.
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