Ridgefield family fights Fragile X Syndrome on many fronts
For the third consecutive year, Ridgefield students Jordan and Ari Sarup joined the National Fragile X Foundation on Capitol Hill in Washington, D.C., to advocate for those impacted by Fragile X Syndrome.
Jordan, now a sixth grader, was born with a genetic condition called Fragile X Syndrome (FXS) that classifies him as intellectually disabled. FXS is the most common cause of inherited intellectual disability, and the leading known genetic cause of autism.
While FXS is considered a rare condition with only 100,000 individuals in the U.S. having it, one in 150 women in the U.S. carry the Fragile X gene, giving them a 50% chance of having a child with FXS. Individuals with FXS are missing a protein that regulates the nervous system, so they live in fight or flight mode.
Fragile X advocates from 26 states met with over 100 Congressional offices to advance Fragile X research, legislation to improve medical care for those with Fragile X, and raise awareness of Fragile X in Congress. Over the past 17 years, the efforts of National Fragile X Foundation (NFXF) advocates have helped secure more than $400 million in federal funding for Fragile X research and programming. They also helped pass the Ace KIDS Act that became law in 2019, and worked for eight years to help pass Achieving a Better Life Experience (ABLE) accounts in 2014 — legislation allowing individuals with disabilities and their families to save for their living expenses in tax-deferred accounts similar to 529 college saving accounts. Advocates also established the Congressional Fragile X Caucus, which Congressman Jim Himes, whose Connecticut Fourth District includes Ridgefield, agreed to join upon the Sarup family’s request.
The boys’ parents, Stephanie and Rajat Sarup, believe that maintained funding requests for Fragile X Syndrome at the Centers for Disease Control, National Institute 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 Sarup, who serves on the foundation’s board of directors.
“We also believe raising awareness is paramount, since four in 10 families report they visited a health professional at least 10 times before their child was diagnosed, according to the CDC,” said Stephanie Sarup.
That’s why on July 22, the date officially recognized by Congress as Fragile X Syndrome Awareness Day, Jordan and his family climbed to the summit of Mt. Washington to raise awareness. It’s why Jordan rang the NYSE closing bell on July 5, and why “Momma Cherri,” a favorite of Gordan Ramsay’s from his series Kitchen Nightmares, filmed a YouTube episode “Momma Cherri’s Fragile X Syndrome Burger”.