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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 private 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 success are numerous other families with afflicted children-- Of particular note is the Logan family from Plainville, Connecticut, which has raised $364,298 in honor of their daughter, Rhianna, through community fund-raising activities, which include an annual cut-a-thon and a dance. Steve Moff, of Williamsport, PA, father of Sydney and Hunter, who both are afflicted with Sanfilippo, crossed the finish line of the Marine Corps Marathon in the fall of 2004 and raised more than $18,900 for the Foundation by encouraging donations in support of his "race for the cure" from friends, neighbors and business associates. Doug and Tracie Nicoll of Colorado Springs, Colorado, formed "Pennies for Nicoll" shortly after their two sons, Douglas and Cameron, were diagnosed with Sanfilippo in the spring of 2002. Its first fund-raiser, the "Pennies for Nicoll Golf Classic," raised more than $60,000 for the Foundation. Stuart and Jennifer Siedman of Wellesley, Massachusetts, formed “Ben’s Dream,” a committee devoted to raising money for Sanfilippo research and the Foundation in honor of their son, Benjamin. In March of 2001 Ben turned five. To celebrate, his parents, Jennifer and Stuart, decided to establish Ben's Dream: Sanfilippo Research Foundation. Working cooperatively with the Wilsons and The Children's Medical Research Foundation, the Siedmans formed their own Public 501 (c)(3) non-profit Foundation. By coordinating research dollars with The Children's Medical Research Foundation, the Siedmans and Ben's Dream hope to target the most promising research. Greg and Toni Graham of Salinas, California, have formed a foundation, “Little Jacq’s Corner,” in honor of their daughter, Jacqueline, for the purpose of raising funds for research and The Children’s Medical Research Foundation. The Grahams' efforts have raised $39,200 for the Foundation. The Wilsons also have helped the Lintons, on behalf of their daughter, Elisa, of Toronto, Canada, and Andrew and Rebecca Dopheide, on behalf of their daughter, Julia, of Omaha, Nebraska, form similar foundations in the hope of continuing to expand research into the disease that afflicts a child in all these families. |
Questions or problems regarding this web site should be directed to curekirby@sbcglobal.netCopyright © 2000-2008 Children's Medical Research Foundation ®. All rights reserved. Last modified: Monday July 14, 2008. |
