Attending her first Advocacy Day in Washington, DC, back in 2009 served as Shari’s introduction to everything the NFXF has to offer, including an avenue by which she could be a more active participant in helping her son Justin have the best life possible after his diagnosis of Fragile X Syndrome in 2006 at age 10. Since then, Shari, her husband, Brian, and their daughter, Hailey, 22, have been active members. Over the years, she has attended numerous Advocacy Days, NFXF International Fragile X Conferences, and served as the co-leader of the NFXF Community Support Network of Greater NYC for two years.

In 2010, the Silver family created the Fly With Me Fund to assist other families living with Fragile X syndrome and related disorders to gain access to appropriate care and to support Fragile X-related research. In addition to the NFXF, Shari is involved at the UC Davis MIND Institute, becoming a member of their National Council of Visitors in 2019.

The NFXF has been vital in giving Shari the ability to parent and help the world understand her son. “It has also given me a tremendous extended family. I am honored to join the board so I may play some role in ensuring families to come will have the support of the NFXF.”