The NFXF Blog
My Child is Home… Now What? Keeping a Routine
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?
Fragile X Premutation Carrier Study at USC
The University of South Carolina is conducting a research study focusing on the range of language, social, and cognitive features that may be associated with variations on the FMR1 gene. Women age 35-75 who are carriers of the Fragile X premutation may be eligible to participate.
Study to Learn About the Cognitive Profile of Children with a Full Mutation of Fragile X
An Alliant International University clinical psychology doctoral candidate is conducting a research study to learn about the cognitive profile of children with a full mutation of Fragile X. Males and transgender females between the age of 8 and 12 may be eligible to participate.
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.
NFXF 17th International Fragile X Conference Scholarship Applications Now Available
Thanks to the generosity of local NFXF chapters, community partners, and private donors, conference scholarships have been made available to assist those who might not otherwise be able to attend this year’s conference. DEADLINE: March 25, 2020
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.
Junior Investigators: Helping Secure the Future of Fragile X Scientific Research
Ten $1,000 scholarships for Junior Investigators whose area of focus is Fragile X to be awarded for both basic and clinical science research. DEADLINE: February 24, 2020.
Call for Presentations for the 17th NFXF International Fragile X Conference
The call for presentations for the 17th NFXF International Fragile X Conference opens January 29, 2020. Here is everything you need to know to submit your presentation. DEADLINE: February 24, 2020
