The NFXF Blog
Prodromal Markers of Upper Limb Deficits in FMR1 Premutation Carriers and Quantitative Outcome Measures for Future Clinical Trials in FXTAS
This system could potentially predict FXTAS onset in premutation carriers who are not showing signs of FXTAS on a neurological exam.
Why Laurie, Will, and Caroline Bridges Support the NFXF
The Bridges have been supporting the Fragile X community for years. They took a few minutes this month to tell you why and encourage you to join them in supporting the work of the National Fragile X Foundation this month. Hear what they have to say.
Sleep Problems in FXS: Cross-Sectional Analysis of a Large Clinic-Based Cohort
FORWARD // Findings showed that sleep difficulties are prevalent in children with FXS and, although they tend to be mild, they are associated with behavioral problems and negative impact to families.
It’s All About Employ-Ability!
Paula Fasciano and friends opened Bake Ability so they could give employment opportunities to individuals with intellectual and developmental disabilities.
2021 NFXF Webinar Series: Fragile X Premutation
Dr. Randi Hagerman joins us to discuss the latest information and research on premutation carriers. The recording includes the Q & A session following her presentation. You can watch the video and access the additional resources.
A Human Forebrain Organoid Model of Fragile X Syndrome Exhibits Altered Neurogenesis
While there is promise for future treatments, utilizing this iPSC brain organoid model for future treatment development could prove to be successful.
Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade
This study shines a light on the need for better long-term support and care planning for individuals with Fragile X syndrome.
An Update on Our Advocacy Efforts
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.
2021 NFXF Webinar Series: Medication Use in Fragile X Syndrome
Collaborate with us. Families learn how behavior, communication, and sensory processing are connected. Further, families are provided with sensory, communication, and behavioral strategies that can be implemented within daily routines. An emphasis on collaborative and evidence-based practices is highlighted.
An Xtraordinary Employee: Clay
A concern for parents of children with Fragile X syndrome is their level independence as an adult. This is Clay and his mother June's story.
Understanding a Fragile X Intermediate Result
Adult neurologists and reproductive specialists increasingly recommend Fragile X testing, as awareness has grown about FXTAS and 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.
Discovering Your Young Adultʼs Strengths for a More Satisfying Career Path
First jobs are hard, and as a young adult with Fragile X syndrome it may be nearly impossible without a little help from parents and others in their lives to help them recognize their own strengths.