The NFXF Blog
We’re Here to Help During This Extraordinary Time
LINDA SORENSEN — With most of us staying at home now, we’re committed to providing you with the most timely and meaningful educational resources we have available. This includes sharing a series of articles, video series, and webinars.
My Child is Home… Now What? Keeping a Routine — Webinar
In this webinar, Rebecca Shaffer guides us through the importance of having a routine, including providing predictability and lowering anxiety, and how to create and build your own for you and your child.
Get Moving with Special Olympics’ Fit 5
The Special Olympics is a valuable program for so many families, and the Fit 5 program can help with you and your child's daily living strategies and routines.
COVID-19: My child is home from school or work or a day program! What do I do?
Timely advice from Jayne Dixon Weber for parents and families asking: What am I going to do with the children all day? How do I get supplies in the house? What if someone gets sick? What if I get sick? What about my work? What if things fall apart at home?
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.