BENEFITING: TEAM SANFILIPPO FOUNDATION
ORGANIZER: TEAM SANFILIPPO FOUNDATION
Nola, our sweet daughter, will turn 2 on January 10, 2015. She has Sanfilippo Syndrome A (MPS IIIA).
Children suffering from Sanfilippo are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brain & body leading to severe disability & death before they even reach their teen years.
BUT there is HOPE! Gene therapy clinical trials at Nationwide Children's Hospital (Columbus, Ohio) scheduled for 2015. BUT these clinical trials are still lacking necessary funds.
We hope to see Nola have the opportunity to become the woman she was created to be. We are desperately hoping that we will not lose her to this devastating disorder.
Team Sanfilippo is diligently working to make our hope & the hope of so many other parents of children with Sanfilippo Syndrome a reality. We are so grateful for the work they have accomplished so far & want to do whatever we can to fund the medical research & clinical trials that could possibly treat or cure Sanfilippo Syndrome.
Please consider supporting Team Sanfilippo. Your support gets us one step closer to making our hope a reality!
Shiloh & Derek Carter
TEAM SANFILIPPO FOUNDATION - www.teamsanfilippo.org
Team Sanfilippo Foundation was started by a group of parents with the mission of finding potential therapies that can be tested clinically in the near future. It is our desire to advance research, education, improve the quality of life for the children affected by this disorder & ultimately find a cure.
Due to recent scientific advancements in the areas of enzyme replacement, gene therapy, & small molecules which has led to the initiation of clinical programs for Sanfilippo Syndrome, we are focused on the development of combined therapies to give children the best possible treatment strategies.
Help us realize this focus & bring the gene therapy program at Nationwide Children's Hospital to clincial trial. Team Sanfilippo is a 501(c)3 nonprofit foundation. All contributions are tax deductible. Thank you!