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Former U.S. congressman partners with UMMC to help people with fragile X syndrome


The University of Mississippi Medical Center and former U.S. Congressman Gregg Harper are joining forces to raise awareness for fragile X syndrome (FXS) while also looking to aid people who have the condition.

FXS results from mutations in a gene on the X chromosome and is the most commonly inherited form of developmental and intellectual disability. For many, it’s often confused with autism, resulting in multiple misdiagnoses.

Harper, whose 34-year-old son, Livingston, has FXS, became a champion in the fight to aid individuals who have FXS and other intellectual disabilities while in office. During his time in Washington D.C., the now-retired congressman created the Gregg and Livingston Harper Congressional Internship Program for Individuals with Intellectual Disabilities.

The program worked in conjunction with George Mason University’s LIFE Program to give students with varying intellectual disabilities an opportunity to gain congressional work experience. Today, Harper is eager to work with UMMC in finding participants for clinical trials linked to testing medication that may become the very first prescription that would be used to assist individuals with FXS.

“We’re really excited that the University of Mississippi Medical Center is involved as one of the sites in the country for the reconnect trial, which is for a prescription that, if approved by the FDA, will be the very first prescription specifically for someone with Fragile X Syndrome to help on social avoidance and behavioral issues,” Harper said on MidDays with Gerard Gibert.

According to UMMC, anyone between the ages of three and 17 who has FXS and meets eligibility requirements can participate in the experimental trial process. Those interested can determine eligibility and become a part of the program by applying here.

The full interview with Harper can be watched below.

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