The NFXF Blog
Study: Language, executive function, and quality of life of those with the Fragile X premutation
Researchers at the University of Arizona are recruiting adult men living with the Fragile X premutation for a study on language, executive function, and quality of life.
The NFXF Heartland Chapter Hosts 8th Annual “Bike To X Out Fragile X”
The 8th Annual Bike to X Out Fragile X took place on a beautiful Saturday, June 3, 2023.
Views and Experiences of Caregiver Coaching in Early Childhood Speech-Language Services: A Survey of Caregivers and Speech-Language Pathologists
The Research in Developmental Disabilities and Language Lab at The University of Wisconsin-Madison is conducting a survey to learn about you and your child’s experiences in speech therapy during early childhood.
Study: Behavioural and Emotional Outcomes in individuals with Neurodevelopmental Disorders (BEOND)
The Cerebra Network for Neurodevelopmental Disorders is conducting a survey to learn more about behaviour, social functioning, sleep, hyperactivity, mood, physical and mental health, as well as family functioning and wellbeing, and how these change over time.
Allos Pharma Inc. Receives FDA Guidance and Support for their Phase 3 Trial of Arbaclofen in Fragile X Syndrome
Allos Pharma Inc. received invaluable FDA feedback on the design of their Phase 3 trial for arbaclofen for the treatment of Fragile X syndrome.
The effect of college degree attainment on neurodegenerative symptoms in genetically at-risk women
Researchers at the University of Wisconsin explored the relationship between obtaining a college degree and the manifestation of the neurodegenerative symptoms of FXTAS among women at elevated genetic risk.
Fragile X-associated tremor/ataxia syndrome rating scale: Revision and content validity using a mixed method approach
Researchers across several institutions set out to develop a revised version of the FXTAS-RS designed to specifically assess FXTAS motor signs.
The Fragile X Clinic and Research Program at Rush University Medical Center
Highlighting the Fragile X Clinic at Rush University Medical Center, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
Rare Across America 2023
Register now to join other rare disease advocates for meetings between August 7th - 18th. Sign up today for Rare Across America!
Survey: Developing a Caregiver-Reported Survey in Neurodevelopmental Disorders: The Neurodevelopmental Disorder-Health Index (NDD-HI)
The Center of Health and Technology’s (CheT) Outcomes Division is conducting is conducting a survey to learn about [the most prevalent and impactful symptoms of FXS that the individual experiences, as reported by the caregiver.
FMR1 CGG Repeats and Stress Influence Self-Reported Cognitive Functioning in Mothers
Researchers at the University of Wisconsin looked at the relationship and influence of FMR1 CGG repeats and stress on self-reported cognitive functioning in mothers.
The diagnostic experience of women with fragile X–associated primary ovarian insufficiency (FXPOI)
Researchers at Emory University conducted qualitative interviews with 24 women with FXPOI exploring how FMR1 screening, physician education, and supportive care impacted their experience receiving a diagnosis. Their results are in!