WATCH: Ridgefield resident Jordan Sarup rings closing bell
Ridgefield resident Jordan Sarup rang the closing bell at the New York Stock Exchange on Friday, July 5.
Jordan, a rising 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.
Earlier this year, joined the National Fragile X Foundation on Capitol Hill in Washington, D.C., to advocate for those impacted by Fragile X Syndrome.
In New York last week, Jordan rang the bell with members from the National Fragile X Foundation and the FRAXA Research Foundation.
To watch Jordan ring the bell, click here or visit livestream.com/NYSE/NationalFragileXFoundationClosingBell2019/videos/193408825
For more information on the the National Fragile X Foundation, visit fragilex.org.
Fragile X Syndrome (FXS) Awareness Day
July 22 is Fragile X Syndrome (FXS) Awareness Day, as recognized by the United States Congress. FXS is a genetic condition causing symptoms ranging from learning disabilities to severe intellectual disabilities. It’s the most common known cause of inherited cognitive impairment and the leading known genetic cause of autism, with 1 in 150 women carrying the gene.
On July 22, the Sarup family will climb Mt. Washington in support of a cure for Fragile X Syndrome.
"Please consider a donation to the National Fragile X Foundation, which is an integral part of our lives as a result of our son Jordan’s diagnosis," said Stephanie Sarup. "All funds raised support their mission to enrich lives through educational support and advance research towards a cure for Fragile X."
To donate go to: https://give.fragilex.org/fundraiser/1880945