The NFXF Blog
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.
Southeast Pennsylvania X Strides 2019
The cold could not stop X Strides 2019 Southeast Pennsylvania! We had 260 registered, including 17 self-advocates and we raised $29,600 for Fragile X! Thanks to all who ran, walked, or donated to our [...]
Faces of Fragile X: Ross and Brooks
Brooks and Ross are two cool guys-------they are polar opposites, though. Brooks loves his music (loud) and Ross does not like music. Brooks is tough and rugged and Ross is more fragile. Brooks loves being around people and Ross is a loner.
How to Advocate for Fragile X
Gregg Harper, a former Member of Congress, gives you 3 tips to effectively advocate for Fragile X in Congress and anywhere else in government.