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Fundraiser since Aug 2022
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David_Jason Fishman's StoryDAVID AND JASON FISHMAN’S FUNDRAISING PAGE Although David (45) and Jason (42) were born with Fragile X Syndrome and had always been in special education programs when they were in school, they weren’t formally diagnosed until they were 11 and 8, respectively. Since moving to St. Louis in 2011, we have been active in the Fragile X Resource Center of Missouri, which has linked us with other parents who are experiencing many of the same challenges that were uniquely specific to David and Jason. We all benefit from staying on top of the latest developments that have been shown beneficial to our children. The FXRCMO serves as a conduit for all of us in the region to learn more about state-of-the-art treatments and therapeutic techniques for Fragile X so that those of impacted by the syndrome can lead the best life possible. As adults, David and Jason are happy with their lives and participate in many activities. Both of them work part-time: David at Straub’s Grocery Store stocking shelves and Jason as a dishwasher at the University City Childrens Center (Jason also works on some Saturdays as a cart attendant at Target). Both of them enjoy being out in the community and they participate in many activities such as Special Olympics (bowling and tennis) and they also work out regularly at the Clayton Rec Center. They are involved in other activities in St. Louis including “Theatre Unlimited” musical productions at the JCC (the next production will be Fiddler on the Roof) and dining with students at Washington University in their “Natural Ties” program. Since the pandemic, they have kept busy using Zoom and they continue their activities as much as possible taking Pilates and cooking classes remotely. NEW INSIGHT INTO FRAGILE X FAMILY OF DISORDERS Not only does Fragile X Syndrome affect David and Jason, another associated condition now affects Sue: Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), a condition which causes her to have significant tremors. FXTAS wasn’t discovered until 2001 and much research still needs to be done in this area. The entire family recently attended the International Fragile X Conference in San Diego where David, Jason and Sue participated in Fragile X research studies before the start of the conference. MOVING FORWARD The FXRCMO mission now is to move forward so that more awareness and more research are supported. The Fragile X Resource Center of Missouri not only supports families, education, and advocacy efforts locally, but it contributes to the National Fragile X Foundation, which oversees national and international medical and therapeutic research and also oversees the annual National Advocacy Day trips to Washington to talk to our Congressional representatives about legislation that would benefit the FX population as well as other constituents with disabilities (Jason and Jack have been on six trips since 2013).
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FXRCMO Annual Walk for Fragile X
Sunday from 9:00 AM - 12:00 PM CDT
ON-SITE REGISTRATION ONLY. The Annual Walk for Fragile X is a one mile walk that supports those living with or affected by Fragile X syndrome. A light lunch, silent auction, raffle and entertainment are provided. You can register online until September 9 at 4pm. At that point, registrations will be accepted onsite. Donations will be accepted online for two weeks after the event.
The Fragile X Resource Center of Missouri is a parent-run 501c3 that provides free educational programs, family support services and advocacy work for those living with or affected by Fragile X syndrome. Fragile X syndrome is the most common cause of inherited intellectual disability.