Meet Our Donors

Laurie and Will Bridges have a daughter, Caroline, who was diagnosed with Fragile X Syndrome when she was five years old.  Caroline is now 16 and starting her senior year in high school.  Laurie and Will were shocked when they received Caroline’s diagnosis but moved quickly to find all they could to help her.  The National Fragile X Foundation connected them with a new “Fragile X Family,” full of support, knowledge, and connections to others like themselves.

As Laurie says, “The foundation has a strong desire to help families like ours. Because of the resources found at NFXF, we have had access to education and research opportunities. These opportunities have had life-changing effects for our sweet Caroline. She is now looking at college programs for those with special needs and her future is bright. In fact, she just received her driver’s license! We support the National Fragile X Foundation because of the life-changing programs it provides. We are proud to be a part of this Fragile X Family, and the National Fragile X Foundation.”

Laurie became active as a volunteer in 2011 and led the Texas chapter before joining the NFXF Board of Directors in 2020. Laurie and Will have been sustained monthly supporters of the NFXF since 2014 and Leadership Partners since 2018.

Thank you, Laurie and Will for your ongoing support of the NFXF!

Kerry became connected to the NFXF in 2019 when her youngest son, Will, was diagnosed with Fragile X syndrome at the age of 4. Will was the first person in their family to be diagnosed with anything related to Fragile X.

The youngest of three siblings, Will was typically developing when he was a toddler; just a little slower to talk than his siblings. His preschool teacher said he was defiant in class and was delayed, which came as a surprise to Kerry and Adam. After undergoing a screening at the elementary school, Will was thought to have hypotonia (decreased muscle tone).

Kerry, an OB/GYN physician assistant, used her medical training to begin researching all disorders associated with hypotonia. After reading a description of Fragile X and researching a little more, she asked her pediatrician for a referral to a geneticist to get her son tested. During her research, Kerry found the National Fragile X Foundation’s website and found a wealth of useful information.

For Kerry, creating awareness about Fragile X and becoming an advocate for individuals with intellectual disabilities is critically important. Since Will’s diagnosis, others in their family have been diagnosed as Fragile X carriers as well. With 1 in 151 women being carriers of Fragile X, she wonders how many others in her community may be carriers and just not know it. Carrier screening isn’t always readily available or covered by insurance. Most people think it’s not in my family, so they don’t push to get tested. She hopes to see that change in the future.

Kerry has found the resources and support of the NFXF — from treatment guidelines and webinars, to the chance to connect virtually with others — to be incredibly useful over the past year and a half. She is especially appreciative of the thought and care that goes into each publication and resource for families.

“Thank you for all you do at the foundation! From the conference, to the webinars, to the helpful articles, to the supportive emails … I could go on and on.❤

“We are so thankful for all you do to support families with Fragile X! We make this donation in honor of Will and everyone else with Fragile X, along with the siblings, parents, grandparents, and family members who love them.”

Thank you to Kerry and Adam — and to Kerry’s parents Jonelle and Jon McKee — who became monthly supporters of the NFXF in 2020!

Gail and her husband Lyons began supporting the NFXF in 2005 when she helped host the NFXF International Conference in Atlanta.

Gail is an advocate. She has three totally different children, with three different learning styles, and she taught all three of her kids to not just reach but exceed their potential. As Gail says, “Attitude matters … it matters if you set up a positive attitude. I realized as the advocate for my child that you can change people’s response with your own positive attitude.”

Gail’s son Scott was diagnosed with Fragile X syndrome in 1989 at the age of 9. The gene hadn’t been identified yet in 1989, but through cytogenetic testing (which is very labor-intensive testing), she and her cousin finally found out that they had the gene in their family.

Fragile X gave Gail a cause to fight for. When Scott was in school, she became an advocate for special education and made sure to get him the best teachers she could. As a board member of the Anti-Defamation League, Gail now finds that she can bring her experience with special needs to her work of fighting hate and having biases. Gail says she’s a better person for having this child with special needs because she knows firsthand how important it is to feel included. And she brings that knowledge to the other work she supports.

Gail’s daughter Carly is a Fragile X female carrier. She was the first person at the National Institutes of Health who was diagnosed with FXPOI (Fragile X-associated primary ovarian insufficiency) as part of their rare disease study in 2002. She now works as an occupational therapist doing autism evaluations at Boulder Community Hospital. “Carly understands Scott better than I do. I know she communicates with him better than I do. She really knows Scott.”

Both Carly and Jared, Gail’s eldest son, pursued careers in the medical field that works with special needs and rare diseases. Carly’s years-long struggle to find a diagnosis for her own FXPOI condition inspired Jared to start his company called CrowdMed, whose mission is to harness the collective wisdom of a global online medical community to provide patients with a clear path to their diagnosis and cure.

Gail’s brother Stephen was diagnosed 10 years ago with FXTAS (Fragile X-associated tremor/ataxia syndrome). This has inspired her to fund research and clinic for Fragile X related disorders through the MIND Institute at UC Davis.

Recently, Gail and her husband funded the building of a new 400 square-foot sensory cabin known as The Den at a residential summer camp near Atlanta that both she and her children attended. It came to Gail’s attention that a special cabin was needed to provide respite for campers who were over-stimulated, or who needed OT. “Our vision is The Den will give campers and staff a place to chill out and learn coping skills. It is our hope that The Den provides a source of calm and lessens unnecessary stressors in life to contribute to a happy and positive experience at Camp Barney.”

Thank you Heyman Family for your ongoing support of the NFXF!

For the fourth consecutive year (2017–2020), the Sarup family has held an #AnythingForFragileX fundraiser, raising over $50,000 for the National Fragile X Foundation while helping to raise awareness for Fragile X.

Their eldest son, Jordan, is 12 years old and has Fragile X syndrome. Jordan’s mother Stephanie says, “We believe raising awareness is paramount since, according to the CDC, four in 10 families report they visited a health professional at least 10 times before their child was diagnosed.” That’s why in 2019, on July 22, the date officially recognized by Congress as National Fragile X Awareness Day, Jordan and his family climbed to the summit of Mt. Washington (the highest peak in the Northeastern United States) to raise awareness. It’s also why Jordan rang the New York Stock Exchange closing bell that same year on July 5. And it’s why Momma Cherri, a favorite of Gordan Ramsay’s from his series “Kitchen Nightmares,” filmed the YouTube episode “Momma Cherri’s Fragile X Syndrome Burger.”

In 2020, due to circumstances around the coronavirus pandemic that limited outdoor adventure, Jordan’s father, Rajat, biked 100 miles in his dark basement on a sunny Saturday morning with his family cheering him on. Despite it being a difficult time to request support from others, they raised a record-breaking $6,000 in six days.

Stephanie and Rajat also believe that maintained funding requests for FXS at the Centers for Disease Control, National Institutes of Health, and Department of Defense are critical to improving the lives of those impacted. “We meet with Congress every year because we believe federal funding and public policy efforts move the dial the most toward finding a cure,” said Rajat, who serves on the NFXF Board of Directors. Over the past 17 years, the efforts of National Fragile X Foundation advocates have helped secure more than $400 million in federal funding for Fragile X research and programming, more than one family could ever do alone.

Because awareness is a lifelong mission until there’s a cure, their family has embraced a passion and strength of Jordan’s, traveling, to help raise awareness by sharing their journey across the globe with Fragile X Syndrome.

Thank you, Stephanie, Rajat, and Jordan for your ongoing support of the NFXF!

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.

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!

Anne and Jay Souder have been active supporters of the National Fragile X Foundation since the mid-1990s after their son Alec was diagnosed at the age of five. Upon his diagnosis, Anne immediately began to research and learn everything she could to help Alec and her broader family. She took Alec to Denver Children’s hospital when he was six to see Dr. Randi Hagerman, and she met with a genetic counselor who helped explain and diagnose Fragile X within her extended family, many of whom then learned that they were carriers or had full-mutation FXS — a total of 12 relatives spanning four generations.

Anne discovered the NFXF early in the quest for support for her family and she was struck by the way the foundation focuses not just on facilitating research but on providing much needed, ongoing and varied, support to families; and that was something that really resonated with her.

Jay’s more direct involvement with the NFXF, inspired by Anne’s lead over many years, came later. He joined the board in 2013 when Alec was in his 20s and served as board president from 2018 to 2020. He remains a member of the NFXF board’s Executive Committee and will complete his board service at the end of this year.

Jay and Anne became Leadership Partners in 2016, and in addition to giving an annual gift to the foundation they have pledged to raise money by hosting fundraising events. With the sponsorship support of their local fitness gym, FitLife, the Souders have raised over $100,000 in three years for the NFXF at their annual FORE! FragileX golf event in Scottsdale, Arizona. In March of 2020, due to the coronavirus pandemic, they had to cancel their scheduled golf event. Incredibly, they retained the financial support and pledges from almost all of their donors and sponsors; a true testament to their dedication and to the relationships they have built with their network of friends and colleagues.

As Jay explains, “Everyone has a unique journey through life; this just happens to be ours. We are only 29 years into Alec’s life journey. The NFXF will be relevant for him for the rest of his life. That is why we continue to stay engaged … because we know that the foundation will stand ready to support him throughout his ENTIRE life journey.” Anne adds that, “the NFXF has always been there for us and we want to do everything we can to make sure that other families will benefit from their work as much as we have.”

Thank you, Anne, Jay, and Alec for your ongoing support of the NFXF!