Faces of Fragile X: Bryan
Meet Bryan. He has Fragile X syndrome. His sister says, he has interests and needs similar to everyone else. We like to tease each other, go to sporting events, and go swimming.
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.
Premutation Conference Brings Together World’s Leading Experts
The 4th annual Fragile X premutation conference was held in the Netherlands in September. Entitled the Fourth International Conference of FMR1 Premutation: Basic Mechanisms, Clinical Involvement and Therapy, it was a gathering of researchers from around the globe to share their current research on Fragile X premutation disorders and think about what is next. The NFXF supported the conference.
Estate Planning: Special Needs Planning for Individuals and Caregivers — Webinar
Learn how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefits.
What a successful year for NFXF Advocates
NFXF Advocates have had a very successful year! Our advocacy efforts focus on ensuring substantial federal investments in Fragile X research, policies that create opportunities for those living with Fragile X to have the best possible life, and an awareness in Congress of Fragile X. Here are some highlights of our efforts this year.
X Strides Heartland – Another Success
Over 145 Fragile X families, friends, and supporters joined together for the 2nd Annual X Strides Heartland in Iowa. Funds were raised, families were connected, and awareness of Fragile X was raised.
Faces of Fragile X: Spencer
Meet Spencer, who has Fragile X syndrome. He loves Power Rangers and did a spectacular job presenting at the 16th NFXF International Fragile X Conference.
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 [...]
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.
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!!!!"