The Isabel Jurado Foundation, Inc. was incorporated in October 2005, and received 501(c)(3) status in November 2006. It was founded in honor and memory of those children, past and present, who have suffered the deadly impact of a genetic disorder called Sanfilippo Syndrome. It is the sincere hope of The Isabel Jurado Foundation that through research and medical treatment this terrible disease can be cured in the not too distant future.
WHO WE ARE AND WHAT WE DO
Making a difference for MPS families
This nonprofit was formed in honor of our daughter Isabel or "Izzy" who has Sanfilippo Syndrome or MPSIII. She was diagnosed at age 3 and is now 14 (Updated: Izzy took her Angel wings on April 4th, 2017). In that time the disease has robbed her of almost all motor and cognitive skills. She also has frequent seizures as well as movement disorder. She can no longer eat or drink by mouth. Izzy is dependent for everything. While other 14 year old girls are enjoying the latest music, fashions and movies, Izzy is struggling daily to stay healthy. In Sanfilippo Syndrome, individuals are missing an enzyme that breaks down a waste product in the cell. With time the waste product accumulates causing cell dysfunction. Children with this disease most often die in their mid-teens.The physical, emotional and financial toll of this disease can be devastating for families. Through her foundation we have been able to assist other MPS families (not only MPSIII/Sanfiliipo Syndrome) in 25 different states in the U.S. with over $250,000 in medical equipment, supplies, respite care and home modifications. We are also on a mission to find treatments for Sanfilippo Syndrome by funding research. Gene therapy in mice affected with Sanfilippo Syndrome has decreased symptoms and increased life expectancy. Clinical trials to administer the enzyme directly to the central nervous system are currently underway for a small group of children in the U.S.
...has actually helped our family twice. Each time, making it possible for us to go out as a family together and continue life as full as we possibly can. Our time together is limited due to Sanfilippo so the assistance you provided us is invaluable.
Baldomero Family - Ryan 14 & Laela 11 - MPS IIIA