The NFXF Blog
Joshua’s Mom on Participating in Fragile X Clinical Trials
Diane and her son Joshua volunteered for a clinical trial a little over a year ago. In this heartwarming video, his mom shares how their family made the decision to participate, and what the experience has been like so far.
Faces of Fragile X: Aaron
I tell people Aaron is not just my son, he's my universe! He is 40 years old. He was one of the first to be diagnosed. He has had many therapies that have ultimately helped him. He is funny and bright in so many ways.
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.
Back to School Resources for Parents (and Teachers) of Fragile X Students
For the 2019 school year, we compiled our most popular school and education resources for parents and teachers.
Drug Interventions for IAAS in Fragile X Syndrome
Research Summary // A regularly cited group of behaviors in individuals with Fragile X syndrome, particularly males, is irritability, agitation, aggression and self-injurious behaviors.
Faces of Fragile X: Brian
Brian loves to be outside. He loves sports. He is on two baseball teams and a basketball team. He loves to bowl. He loves spending time with his friends. He is always helping and looking out for his friends and family. He struggles with managing his behaviors. Sometimes it is all people notice, which is sad because he is so much more.
Faces of Fragile X: Nathan
Nathan has Fragile X syndrome. Read about what his mom loves about him and wants others to know about Fragile X.
Participating in Research Studies and Trials — Webinar
Hilary Rosselot gives advice and guidance to participating in research studies and clinical trials. She is also joined by two Fragile X moms who have participated in several studies and trials and share their perspectives and advice.
Faces of Fragile X: Avi
Meet Avi. He has Fragile X syndrome, and his mom tells us what she loves about him, what she wants others to know, her advice for newly diagnosed families, and more. It is a peek into just one Fragile X family - but worth your time.
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.