The NFXF Blog
CA: Fragile X Walk
Join us at Bonelli Park in San Dimas for a second year!! We will also have a Family Fun Day following the race with food and fun so plan on making a day of it!
Fragile X Premutation With Dr. Randi Hagerman — Webinar
Our very own founder, Dr. Randi Hagerman of the UC Davis MIND Institute, joins us to discuss issues in Fragile X premutation carriers. Needless to say, she is a major force in research for Fragile X and one of the biggest names in our field! Join us for a presentation and some time for Q&A!
Best Practice in Educational Strategies and Curricula
Promising outcomes are continuing to develop using the cognitive phenotype to better understand how to best teach students with FXS.
The Smiling Faces of Our Advocates are Worth More Than Millions
NFXF advocates have been to Washington every year since 2004, and we’ll be there on March 1, 2017, on our 14th consecutive year. Some years, our high hopes were realized and new programs were created because of our hard work. Other years, turmoil in all quarters put us at-risk for cuts, or elimination, but we were thrilled to maintain the status quo. Last year, we stayed in the game and made new, or nurtured, old relationships to make sure we’d be there when the budget reigns loosened. This year our budget balancing act continues, and new friendships with eager learners await our advocates smiling faces. Join us and help us fight the good fight.
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!