we are developing materials for adults with Fragile X syndrome. One area we receive a lot of questions from parents on is advice for applying for Supplemental Security Income (SSI) for their 18-year-old son or daughter.
The Waisman Center at the University of Wisconsin-Madison is recruiting postdoctoral trainees. The Waisman Center hosts a Fragile X clinic and conducts research on Fragile X-related disorders, such as this recently published research on other premutation carrier issues.
While two Fragile X-associated disorders affecting premutation carriers are well documented and accepted by the medical community, other effects of the premutation are a source of debate among the medical community because there has [...]
Early Check is a unique voluntary research study that screens newborns for Fragile X syndrome and the premutation and Spinal Muscular Atrophy free of charge. It gathers important information and hopes to show the benefits of early testing and treatment and improve newborn screening (NBS) across the United States.
We had an amazing first annual X Strides Chicago on July 14, 2019. Everyone that volunteered, ran, walked, organized a team, and donated made it a success. We were a force to be noticed that morning - raising awareness as people asked, What is Fragile X? View photos here.
Findings on the preventive care and health behaviors of children and young adults with Fragile X syndrome. It is based on findings from a survey of FORWARD data.
What would you like others to know about him? He is helpful and very patient when we drag him all over the place. What is your favorite thing about him? His smile is amazing and he is so fun to hang out with. If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be? People with Fragile X have a very genuine heart. School can be a challenge but if you stay involved you can make it through. Once you get through the school years it is easier for them to be themselves.
Robby Miller's story of his trip to the Philippines to establish a Fragile X clinic at the already existing MedMom Clinic in Manila.
