[Congressional Record Volume 165, Number 121 (Thursday, July 18, 2019)]
[Extensions of Remarks]
[Page E948]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




               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.

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