Parent Survey: Children’s Behavioral Strengths and Challenges
The MIND Group at the University of Minnesota is conducting a survey for parents of children with Fragile X syndrome to learn about how genetic and neurodevelopmental differences impact behavioral strengths and challenges. Parents of 3–17 year old children living with Fragile X are eligible to participate.
Study: Language Environment Analysis Project (LEAP)
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 Family Reunion You Want to Go To
Emily Mack remembers her first time at an NFXF Int'l Fragile X Conference. “The best part was that it was the first time where I truly felt like everyone around me just understood, without explanation of who we were, what Fragile X was, and the highs and lows that it can bring to everyday.” Read her story.
News for Fragile X Siblings and Self-Advocates
The February 2020 National Fragile X Foundation's Siblings and Self-Advocates Network news covers advocacy tips and features Alex Eyermann, a self-advocate.
Purdue Early Childhood Study – PANDABox
Purdue University is conducting a research study to learn about development of infants with Fragile X syndrome. Boys and girls ages 6-18 months with the full mutation may be eligible to participate.
Fragile X Premutation Carrier Study at University of Kansas
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.
Study with Children with Fragile X Syndrome Losing Baby Teeth
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.
NFXF, Heartland Chapter — Iowa and South Dakota, Receives Valero Grant
Valero loved Heartland Chapter Vice President Brenda Slama’s sensory room proposal and awarded the chapter with a $6,200 grant during the 2019 Valero Texas Open Benefit for Children.
Faces of Fragile X: Eric
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.
Can I use CBD to treat Fragile X syndrome?
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.
What Advice Do You Have for SSI
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.
Faces of Fragile X: Spencer G.
Meet Spencer, who has Fragile X syndrome. "Spencer is the definition of joy. He loves to smile, read, swim, and play baseball.