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These strategies are based on the fundamental principles of time-out, while incorporating adaptations that address the fact that children with Fragile X syndrome have language and attention difficulties that are best accommodated through additional considerations for repetition, consistency, and predictability.
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FXTAS was first described in five grandfathers of children with Fragile X syndrome in 2001 by Dr. Randi Hagerman and her colleagues.
In 2006, there were 11 medical institutions in the country with doctors and other specialists focusing on Fragile X syndrome. Today, there are more than 30 Fragile X clinics.
Research Summary: This research was very revealing. Currently, we do not have accurate methods to predict who will develop FXTAS and who will not, or when the disease will start.
PureTech Health has been awarded a grant from the DOD for their trial of LYT-300, oral formulation of allopregnanolone, in people with FXTAS.
With the establishment of the FXTAS diagnostic criteria and the successful management of the symptoms of this disease, the next steps are focused on finding a cure or reducing the FXTAS progression.
You will get personalized care and evaluation at the Fragile X Syndrome Clinic at Rush — the only clinic for this genetic disorder in Chicago.