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!!!!"
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.
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.
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.
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.
Research Summary // Intellectual disability and co-occurring mental health conditions can be interpreted as autistic features, making it difficult to diagnose in FXS.
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.
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.
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. 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.
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 [...]
Governor Hency McMaster proclaims July 22, 2019 as Fragile X Awareness Day in South Carolina. Read his entire proclamation.
Ian has Fragile X syndrome. Meet Ian and see what his mom says about him, what she wants her community to know about Fragile X, and her advice for new parents.
July 22 is National Fragile X Awareness Day. Wear green, pack your lunch, and donate your lunch money to the National Fragile X Foundation. And urge your coworkers do to the same!
John Menke has FXTAS. Read what his daughter, Kelly, has to say about him, FXTAS, research, advice to new parents, and more.
