Get excited for the Fragile X of Minnesota's 2nd Annual Fundraiser at Beaver Island Brewing Company! Good beer, good times and a good cause!
I am thrilled to be the newest member of the National Fragile X Foundation family. I have been impressed with the Foundation’s work for several years now, as my friends and former colleagues are active members. You, the FX community, possess the key to positive change in people’s lives and in Washington – energy and passion.
Love is in the air! Our very good friends, Mouse and Tracy of Developmental FX, join us again to answer questions about Fragile X and behavior on this special Valentine's Day edition of NFXF webinars!
When Tammy and Andy Selinger received their daughter’s diagnosis in 1994, even their doctor was unsure what it meant. He just told them the test was positive for Fragile X. One of their first calls was to the National Fragile X Foundation, where they were connected to a long-time volunteer, Margaret Israel, who spent more than an hour and half on the phone with them. The support they found during such a critical time motivated them to get involved because as Andy says, “Nobody should get diagnosed without someone to talk to.”
The 'Individualized Education Program, also called the IEP, is a document that is developed for each public school child who needs special education. The IEP is created through a team effort, reviewed periodically. Learn how to best advocate for your child and work with her/his instructors to get the best education.
We are pleased to announce the addition of Dan Whiting to the NFXF team as Director of Communications and Government Relations. With over 19 years of experience in public policy, communications and marketing, including 11 years »
With the support of their community, NFXF board members and outstanding CSN leadership, Greater Atlanta Fragile X hosted an amazingly successful Brew Fest event for the second year in a row.
What happens when you combine friendly competition and a campaign to raise awareness of Fragile X? Tremendous success! Western Massachusetts participated in the 2nd annual Hadley Cornhole Championship, raising awareness and over $1,100 for NFXF!
Fragile X DNA analysis is one of the most commonly ordered medical genetic tests. It is recommended as a standard part of the genetic work-up of children with developmental delay, autism or intellectual disability. Adult neurologists and reproductive specialists increasingly recommend Fragile X testing, as awareness has grown about Fragile X-associated Tremor Ataxia Syndrome (FXTAS) and Fragile X-associated Primary Ovarian Insufficiency (FXPOI). Fragile X carrier testing during pregnancy has also become relatively commonplace in the US and elsewhere, even for women without a family history suspicious for Fragile X disorders.
Dealing with critical incidents is very important for caregivers of individuals with Fragile X syndrome (FXS), particularly biological mothers. Unfortunately, critical incidents occur frequently for many caregivers of children with FXS. Behavioral outbursts and aggression are critical incidents that take place in the home or in the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns (Coleman & Riley, 2014), which can amplify their response to these critical incidents.
After eight years of dedicated service, Diane Southard stepped down at president. We gathered as a group to celebrate her accomplishments and formally welcome Sara Hamilton into the role!