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The NFXF Blog

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Parent Survey: Children’s Behavioral Strengths and Challenges

By |Mar 11, 2020|

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)

By |Mar 11, 2020|

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

By |Mar 6, 2020|

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.

Purdue Early Childhood Study – PANDABox

By |Jan 9, 2020|

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.

Faces of Fragile X: Eric

By |Dec 23, 2019|

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?

By |Dec 13, 2019|

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

By |Dec 6, 2019|

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.

By |Nov 22, 2019|

Meet Spencer, who has Fragile X syndrome. "Spencer is the definition of joy. He loves to smile, read, swim, and play baseball.