To help raise awareness of Fragile X for National Fragile X Awareness Day, Rep. Engel had a statement. Read the full statement below or view it in the Congressional Record by selecting the image to the right.
On behalf of the entire Fragile X community, we thank Rep. Engel and Smith for their leadership in Congress on Fragile X issues.
Learn more about and join our advocacy efforts.
HONORING NATIONAL FRAGILE X AWARENESS DAY
HON. ELIOT L. ENGEL OF NEW YORK
IN THE HOUSE OF REPRESENTATIVES
Thursday, July 18, 2019
Mr. ENGEL. Madam Speaker, I rise today in recognition of National Fragile X Awareness Day, happening on Monday, July 22. As the Co-Chair of the Fragile X Caucus with Congressman CHRIS SMITH, I would like to take a moment to raise awareness about this condition, which affects an estimated 100,000 Americans.
Fragile X is a genetic-disorder caused by mutations in the gene known as FMR1. These genetic changes can result in behavioral, developmental, cognitive, reproductive and potentially fatal neurodegenerative conditions. Over 1,000,000 Americans have a variation of the Fragile X mutation, meaning they either have, or at risk, of developing one of the conditions associated with Fragile X. This means that each Member of this House, on average, represents 230 constituents living with Fragile X syndrome.
This past March, I led a bipartisan appropriations letter with Congressman CHRIS SMITH urging the NIH to continue investment in Fragile X research and maintaining federal support for the Fragile X awareness and research programs at the Centers for Disease Control and Prevention, where they fund the FORWARD project, which collects and provides Fragile X data across the lifespan and generations to help improve research towards treatments and a cure. A group of 16 bipartisan Members joined us in this effort.
On National Fragile X Awareness Day, I urge all my colleagues to take time to learn the impact of this disease and how we can pass legislation that improves the lives of Americans living with Fragile X.