Mindfulness and Me — Webinar
From our good friends at Developmental FX, Tracy and Ruth on using movement and meditation to deal with the anxiety and challenges of daily life being turned upside down.
My Child is Home… Now What? Keeping a Routine — Webinar
In this webinar, Rebecca Shaffer guides us through the importance of having a routine, including providing predictability and lowering anxiety, and how to create and build your own for you and your child.
Get Moving with Special Olympics’ Fit 5
The Special Olympics is a valuable program for so many families, and the Fit 5 program can help with you and your child's daily living strategies and routines.
COVID-19: My child is home from school or work or a day program! What do I do?
Timely advice from Jayne Dixon Weber for parents and families asking: What am I going to do with the children all day? How do I get supplies in the house? What if someone gets sick? What if I get sick? What about my work? What if things fall apart at home?
Can I use CBD to treat Fragile X syndrome?
Craig Erickson, MD, the Director of the Cincinnati Fragile X Research and Treatment Center was asked by the National Fragile X Foundation (NFXF) to discuss the use of cannabidiol (CBD) for people with Fragile X syndrome (FXS) - to answer the questions around, Can I Use CBD to treat Fragile X syndrome.
What Advice Do You Have for SSI
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.
Postdoctoral Training Program in Intellectual and Developmental Disabilities Research Position Openings
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.
New Research Documents 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 [...]
What is Early Check?
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.
Chicago X Strides 2019 Photo Gallery
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.
Preventive Care and Health Behaviors with Children with Fragile X Syndrome
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.
Faces of Fragile X: Nicholas
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.
The Philippines Join the International Fragile X Movement
Robby Miller's story of his trip to the Philippines to establish a Fragile X clinic at the already existing MedMom Clinic in Manila.