The Children’s Medical Research Foundation, Inc. was formed in July, 1995 for the purposes of raising public awareness and funds to support medical and scientific research into the causes of and cures for Sanfilippo Syndrome and other neuro-genetic diseases afflicting children.
The Foundation is a public 501 (c) (3) corporation. Its founders, R. Bradford and Susan M. Wilson, made the decision to form the Foundation shortly after their then four-year-old daughter, Kirby, was diagnosed with Sanfilippo B Syndrome. Doctors can do nothing to stop the regression and little for the symptoms, yet.After talking with doctors and scientists throughout the world, the Wilsons found just one researcher working with their daughter’s disease. The researcher was confident in her research but could not say when a cure would be found. She was hopeful her work would encourage others because “the more of us that work on the disease, the faster we will find a treatment.” Thus, it became urgent to the Foundation’s Board to ensure that adequate funding reached interested researchers as soon as possible.
No public fund-raising organizations are used by the Foundation in order to minimize expenses and maximize the funds available to give to medical researchers. All fund-raising is done by the Foundation’s founders and volunteers. As a result, more than 95% of all receipts to the Foundation have been appropriated to fund research.
Contributing to the Foundation are numerous other families with afflicted children as well as those that formed similar foundations. Of particular note are Anna and David Kidwell of Louisville, KY, in honor of their daughters Brooke and Ashleigh; Cynthia and Gene Logan of Plainville, CT, in honor of their daughter Rhianna with Rhianna’s Hope; Elisabeth and Randall Linton of Toronto, Canada, who formed The Sanfilippo Children’s Research Foundation in honor of their daughter Elisa; Jennifer and Stuart Siedman of Wellesley, MA, who established Ben’s Dream: Sanfilippo Research Foundation in honor of their son Ben; Joan and John Bellontine of Huntington Station, NY who founded Grace for a Cure in honor of their daughter Grace; Tracie and Doug Nicoll of Colorado Springs, CO, in honor of their sons Douglas and Cameron with Pennies for Nicoll, and Toni and Greg Graham of Salinas, CA, who formed Little Jacq’s Corner for Greg’s daughter Jacqueline.
To date, the Foundation has granted over $4.4 million to ten research groups and now standing the doorstep of a cure. Our mission has never been more defined. We ask for your support in taking this final step to turn hope of a cure into a reality.