The NFXF Blog
Tell Us About An Xtraordinary Employee
his year, as part of our awareness efforts, we are sharing about individuals with Fragile X syndrome who are working – paid, volunteer, full-time, part-time, and more. We want to raise awareness of the value of employment of individuals with intellectual and developmental disabilities for the employee, employer, and their coworkers.
In Memory of Steve Warren
As a geneticist and academic, Warren’s contributions to the understanding of Fragile X and to the broader Fragile X community are immense. In addition to being a gifted scientist, he was an outstanding leader, mentor, and friend who will be greatly missed.
Webinar: Females and Fragile X Syndrome
Dr. Marcia Braden joins us to discuss Females and Fragile X syndrome (FXS). This webinar helps you better understand the features associated with the syndrome. Information processing, cognitive strengths and weakness as well as social issues are identified. Strategies to address common challenges are also discussed.
Welcome to Our Newest Board Members
On behalf of the NFXF Board of Directors, I am excited to welcome our newest class of directors for 2021. This group of individuals have all been active members of our Fragile X community for many years and contribute in all areas of outreach.
Fragile X Awareness Signs
We designed several Fragile X awareness yard signs so you can choose one that serves you best. Each are printed on-demand and shipped directly to you with everything you need to display them in your yard for all of July or even longer if you choose.
AI–Assisted Phenotype Discovery of Fragile X Syndrome in a Population-Based Sample
This study is important for later-diagnosed individuals as it creates successful predictive models that can identify cases five years earlier than clinical diagnosis.
Emergence of Developmental Delay in Infants and Toddlers With an FMR1 Mutation
Data from 8 unique studies speaks to the necessity of early identification of FXS, which leads to earlier, effective medical and non-medical interventions.
Congratulations to the 2021 NFXF Summer Scholar Recipients
Congratulations to our four NFXF Summer Scholars! The Summer Scholars Research Awards are meant to introduce undergraduate students or students in professional training programs to research in the Fragile X field by providing funding for a summer project that adds to the body of knowledge around Fragile X in a meaningful way while providing a distinct training experience.
NFXF Webinar Series: Fragile X Syndrome
Dr. Nicole Tartaglia joins us to discuss Fragile X syndrome (FXS). She covers everything from brief descriptions of the Fragile X-associated disorders, such as FXTAS and FXPOI, to details about FXS.
COVID-19 Check-In: Month 15 — Ready for Re-Entry?
Jayne offers advice to Fragile X families in transitioning back after post-COVID-lockdowns, from school, to housing, to work, and more.
Benefit of BPN14770 for Cognition and Daily Function in Fragile X Syndrome
Your summary of the results, including why it matters to you and next steps, from the Dr. Liz Berry-Kravis and Tetra Therapeutics BPN14770 trial results published in Nature Medicine. This was a randomized, double-blind, placebo-controlled, two-period crossover study.
The Genetics of Fragile X Webinar
Many thanks to Brenda Finucane, MS, CGC, for her webinar to help each of us understand the genetics of Fragile X. The presentation was held live online Wednesday, April 28, 2021. TYou can access an on-demand stream of it here.