The NFXF Blog
I Have FXTAS: Now What?
FXTAS is a chronic disease. If FXTAS patients maintain good general health and do not have other medical problems, many can have fulfilling lives for years after diagnosis. Regular visits to a neurologist, high levels of physical activity, and the use of other therapies and resources are key to sustaining a good quality of life.
Predictors of Attendance at Fragile X Clinics
Research Summary // Samples showed that children who attended Fragile X clinics were mostly male, high-school aged or younger, and white, non-Hispanic.
Journey of Fathers Following their Child’s Fragile X Diagnosis
You are invited to participate in an online research survey to investigate the journey of fathers, following their child’s Fragile X diagnosis and focusing on their support-seeking behaviors.
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.