The Silver Family
Since 2011, Shari and Brian Silver have partnered with the National Fragile X Foundation to support families with expenses associated with traveling to one of the 30+ Fragile X clinics within the United States through their non-profit Fly With Me Fund. The Silvers have helped hundreds of members of the Fragile X community secure comprehensive evaluations, appropriate, cutting edge care as well as participate in both research and clinical trials.
Shari and Brian’s son, Justin, was diagnosed with Fragile X syndrome at the age of five, after suffering a severe grand mal seizure. After having visited multiple pediatric neurologists, they finally found a neurologist who knew to test for Fragile X. This diagnosis was key to helping explain Justin’s developmental delays and to develop an effective treatment plan for him. Additionally, it yielded genetic information for other members of Shari’s family including her father who had lived with Fragile X-associated tremor/ataxia syndrome and her sisters who had suffered Fragile X-associated premature ovarian insufficiency.
Pictured above: Brian, Hailey, Justin, and Shari Silver.
Shari and Brian moved quickly to find experts that could help them understand Fragile X and begin the process of identifying the most beneficial treatments for Justin. Their journey took them to the Fragile X clinics at Boston’s Children’s Hospital, the MIND Institute at UC Davis, and Rush University Hospital. It was at these clinics where they learned about extensive and promising research being done. They also learned about the financial challenge many families face in order to visit a clinic to obtain an evaluation and treatment plan that would benefit their children. Having experienced their own struggle finding an answer and then knowing firsthand the difference Fragile X professionals can make in a family’s ability to deal with FXS, they were inspired to create Fly With Me Fund.
Not only have the Silvers been financial supporters of the NFXF, they have invested their time, talent, and expertise. They have participated in Advocacy Day every year since 2009, often accompanied by their daughter, Hailey. Shari briefly served as co-leader of the Community Support Network of Greater New York City and Brian joined the board of directors of the NFXF in 2013, becoming vice president in 2014 and president in 2016. In 2014, while Brian was employed at Yahoo!, Katie Couric joined the company’s news division. After discussions with Brian, Katie’s interest in FX resulted in the production of a widely viewed Yahoo News interview with Shari and Brian by Katie Couric.
Thank you, Shari and Brian, for your ongoing support and dedication to the NFXF and to helping Fragile X families!