The NFXF Blog
NYC Fragile X Chapter’s Dance Party Recap
The Fragile X Resource Group of Greater New York City gathered on a cold January day to dance their cares away and enjoy time with their Fragile X family.
The Unique Challenges for Females with Fragile X Syndrome
Though males experience both greater frequency and severity of symptoms, females with FXS do present a variety of challenges as well. We take a look at what those are with Dr. Marcia Braden.
Research: Non-Targeted Fragile-X Carrier Testing: Implications for Reproductive Decisions
This study examines women’s experiences with Fragile X carrier screening in the United States. The purpose of our research is to determine how women are being offered carrier screening for Fragile X, when they are offered screening and which healthcare professionals are responsible for returning their results. The study entails interviews with women who have undergone Fragile X carrier screening in the last six months.
MANDT Training Brings Together Families
On December 10, Fragile X Resource Center of Missouri hosted a MANDT training session for local families.
So Much Happened in 2016 Thanks to You!
As we begin the new year, we want to take a moment to thank you for your incredible support in 2016! Because of you, we continued our mission to help all families living with Fragile X. Last year, we accomplished more than we could ever list in a single article so we want to share just a few highlights that happened around the nation because of you!
MO: Fragile X Walk
Mark your calendars and plan to join Fragile X Resource Center of Missouri for their annual Walk for Knowledge!
University of Alberta: Memory Study in Children/Youth
Researchers at the University of Alberta's Department of Pediatrics and Stollery Hospital are completing a study looking at memory in children with a neurodevelopmental disorder or typical development.
Message from NFXF President: It’s an Honor
Dear Fragile X Community, Sharing my family’s Fragile X story with you through the NFXF Annual Appeal was truly an honor. If you haven’t already, I hope you’ll take a moment to read through it and [...]
Summer Student Fellowship: 2016 Summaries
The NFXF Summer Student Fellowship was established to encourage a new generation of Fragile X researchers. By funding young scientists’ research pursuits, we believe that it will continue to push Fragile X into exciting new territory and inspire them to continue important work in this field.
NFXF Webinar: Being Prepared for Adulthood
Dr. Yankowitz discusses the adult transitions you want to start planning well before your child ages out of services. Dr. Yankowitz has more than 30 years experience working with families of individuals with developmental disabilities.
Merchandise Being Sold with Offensive “R-Word” Language
We are incredibly proud of the swift action taken by members of our community, after discovering offensive items for sale on a few major retailers' websites. We stand with you.
21st Century Cures Act Demonstrates Bi-Partisan Spirit
Closely following its passage (392-26 on Nov. 30) in the House of Representatives, the U.S. Senate took up the 21st Century Cures Act and enacted the law by an equally impressive margin (94-5) vote. The law’s next stop is President Obama’s desk, and the President has already made clear his support for the bill and his intent to sign it. Passage will mean nearly $5 billion of new funding for the National Institutes of Health (NIH) and $500 million for the Food and Drug Administration (FDA), along with a plethora of policy provisions that will bolster medical research.