American Idol contestant Sophia James (formerly Wackerman) introduces her brother James, who has Fragile X syndrome, to more than 8 million viewers. Sophia took to social media to help spread awareness and advocate for Fragile X.
Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.
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.
Purdue University is conducting a research study to learn about language and social communication development in Fragile X syndrome. Children ages 3–4 years (36–60 months) with the full mutation may be eligible to participate.
The February 2020 National Fragile X Foundation's Siblings and Self-Advocates Network news covers advocacy tips and features Alex Eyermann, a self-advocate.
The University of Kansas BRAIN Lab is conducting a research study to learn about behavioral and brain differences associated with the Fragile X premutation. Females with the premutation ages 55–80 may be eligible to participate.
Dr. Lawrence T. Reiter is conducting a research study to learn about the molecular changes that occur in neurons in individuals with autism. Your child does not need to have an autism diagnosis to participate.
Eric has Fragile X syndrome, and his mom shares about what Eric is like. "To know Eric is to love him! I love Eric’s compassionate heart and sense of humor. He keeps us laughing." Read more.
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.
The NIH just released their Fragile X Research Plan, which identifies research priorities and aims to coordinate research efforts. We have pulled a few key excerpts.
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.
Meet Spencer, who has Fragile X syndrome. "Spencer is the definition of joy. He loves to smile, read, swim, and play baseball.
The cold could not stop X Strides 2019 Southeast Pennsylvania! We had 260 registered, including 17 self-advocates and we raised $29,600 for Fragile X! Thanks to all who ran, walked, or donated to our [...]
Brooks and Ross are two cool guys-------they are polar opposites, though. Brooks loves his music (loud) and Ross does not like music. Brooks is tough and rugged and Ross is more fragile. Brooks loves being around people and Ross is a loner.
Gregg Harper, a former Member of Congress, gives you 3 tips to effectively advocate for Fragile X in Congress and anywhere else in government.
