The NFXF Blog
Faces of Fragile X: Paul
Paul is one of our Faces of Fragile X. His story is all too common for those with Fragile X - his mom tells us of their initial visit with a psychiatrist when Paul was 3, "After only twenty minutes with the doctor, he told us that Paul would never be able to do much, and that we should think about putting him in a facility or home. He could not have been more WRONG!!!!"
Fragile X Advocacy – August Recess Visits
For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. Here is what you need to know.
Faces of Fragile X: Mitchell
Mitchell has Fragile X syndrome. Read advice from his mom for newly diagnosed families, what she wants her community to know, and what she loves about Mitchell.
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.
Faces of Fragile X: Varun
Varun is a shy, confident witty teen whose smile just melts everyone’s heart. He is fond of baking, dancing, art, and wants everyone to be always happy. Read more about Varun, Fragile X, and advice for newly diagnosed families from his parents.
ASD Diagnosis in Fragile X Syndrome
Research Summary // Intellectual disability and co-occurring mental health conditions can be interpreted as autistic features, making it difficult to diagnose in FXS.
Faces of Fragile X: Matt
Meet Matt and hear from his sister about what she loves about him, what she wants people to know about Fragile X, and her advice for newly diagnosed families.
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: Colin
Meet Colin. He has Fragile X syndrome. He knows everyone and has earned the nickname 'The Mayor.' His mom wants newly diagnosed parents to know, don’t ever give up. It’s ok and it’s not your fault. Advocate, educate and persevere.
Rep. Engel Raises Fragile X Awareness in Congress
Rep. Eliot Engel, D-NY-16, serves as the co-chair of the Fragile X Caucus in the U.S. House of Representatives. His co-chair is Rep. Chris Smith, R-NJ-4. To help raise awareness of Fragile X for National Fragile X Awareness Day, Rep. Engel had a statement. Read the full statement here.
Faces of Fragile X: Cody
What would you like others to know about him? I want people to know that Cody is my reason. My reason why I do the things I do for the Fragile X community. My [...]
South Carolina Fragile Awareness X Day 2019
Governor Hency McMaster proclaims July 22, 2019 as Fragile X Awareness Day in South Carolina. Read his entire proclamation.