Clinical trial being offered to help those with Fragile X Syndrome
JACKSON, Miss. (WLBT) - Fragile X Syndrome is an intellectual disability. Those with it often experience behavioral symptoms such as anxiety, irritability, tantrums, and social unresponsiveness.
“He’s always been great. He’s, you know, loves being around people, and he’s a lot of fun to hang out with,” says Gregg Harper, former U.S. Congressman.
His son Livingston was diagnosed with Fragile X Syndrome at age 4.
“That really was because of a neighbor who was involved with special education for Rankin County Public Schools. And she went to an education seminar that had something on educating children with Fragile X Syndrome, which she’d never heard about. We had not heard about, and she came home and said, ‘I think this may be it.’ And that led to us getting to a definitive diagnosis.”
Now 34, Livingston is a proud employee at Primo’s Café of over seven years. When not working, Livingston enjoys going to Mississippi State University baseball games.
He is a graduate of the ACCESS program at MSU, which allows those with intellectual or developmental disabilities to successfully transition into higher education by living and taking classes on campus.
“A very relatively common and well-known but undiagnosed part of one of the causes for children who struggle with intellectual disability in America today.” This is how Dr. Ingram describes the disorder.
If you know a person between ages 3-22 who have been diagnosed with Fragile X, they may be able to participate in a clinical trial.
“This is something that I think would give our Fragile X community hope. And we do urge people to take a look at this for participants,” he said.
The trial is being offered here in Mississippi and around the country.
“Most of it can be done at your house. A lot of medical studies involve coming here a lot. This study is designed around young people who we know, because of their anxiety about coming to the doctor, don’t want to come see me and we understand that. It’s a test using a gel that contains cannabidiol product to look and see if that can help with some of the behavioral consequences of Fragile X in particular,” Ingram said.
Livingston was the inspiration for the Gregg and Livingston Harper Congressional Internship Program for Individuals with Intellectual Disabilities.
The former congressman founded the program that allows young adults with intellectual disabilities to intern on Capitol Hill.
If successful, participation in this program could help those living with Fragile X, like Livingston, for years to come.
If you are interested in learning more about Fragile X Syndrome or the clinical trial, please visit fragilexhelp.com
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