FRAXA is working to find specific treatments and ultimately a cure for Fragile X, but at present, there is no cure. Fortunately, there are medications to manage symptoms, special education, therapies, and many helpful strategies.
FRAXA is Working Toward a Cure
FRAXA-funded research has achieved significant breakthroughs in understanding Fragile X. We now know that the Fragile X protein’s normal role is to help shape the connections between neurons (brain cells) that underlie learning and memory, and we are beginning to understand how the lack of this protein causes Fragile X syndrome. Because absence of the FMR protein delays the development of neurons, rather than damaging or destroying them, it is likely that treatments now being investigated will benefit all individuals with Fragile X, regardless of age.
There are clinical trials of potential new treatments which are currently accepting participants who have Fragile X.
Most boys and many girls with Fragile X syndrome are significantly affected throughout their lives. The cost to society for treatment, special education, and lost income is staggering. The need for research aimed at treatment is urgent.
Medications to Treat Symptoms of Fragile X
Currently no medicines are specifically approved to treat Fragile X. However, there are many medications to target specific symptoms.
Medications: My Favorite Combination (so far) by Dr. Michael Tranfaglia, FRAXA medical director and Fragile X parent
A Medication Guide for Fragile X Syndrome by Dr. Michael Tranfaglia
Emerging Pharmacologic Treatment Options for Fragile X Syndrome by Drs. Tori Schaefer, Matthew Davenport, and Craig Erickson
Education, Therapies, and Interventions: Fragile X Resources
Fragile X Guide for Parents by Parents is chock full of tips, stories, strategies, and resources from parents, for parents.
Fragile X Medical Clinics are around the U.S. and beyond.
For very young children, ages 0-3, Early Intervention is recommended and can be very helpful. During school years, most children benefit from an Individualized Education Plan (IEP). Speech, occupational, and physical therapy can help.
www.autismspeaks.org/autism-apps for a list of apps for people with autism and Fragile X syndrome
Does Physical Exercise Really Help? A 2015 review of studies suggests that exercise can help people with Fragile X and autism. Exercise for Individuals with Fragile X Syndrome