The NFXF Blog
The Dos & Don’ts of Participating in a Clinical Trial
We live in a day and age of social sharing, and that is not going anywhere. However, when we participate in a clinical trial, we have to understand that we cannot share everything in order to protect the integrity of the trial.
Study: Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)
Researchers at the Autism Assessment, Research, Treatment & Services (AARTS) Center at Rush University Medical Center are currently conducting a fully-virtual research study that is testing two telehealth interventions that are designed to help parents of children with genetic syndromes and intellectual disabilities gain strategies to manage challenging behaviors.
Neural Underpinnings of the Relationship Between Cognition and Gait Dysfunction in Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
Movement disorders researchers at Rush University Medical Center are conducting a research study to learn about brain activation in people living with FXTAS during tasks like walking and thinking. This study is currently recruiting adults ages 50+ who are living with FXTAS.
Happy National Disability Employment Awareness Month!
October is a time that draws the attention of the nation on critical issues related to disability employment, bringing awareness to a subject that we know has importance all year round. We know many individuals living with Fragile X want to work and though some do, not everyone who wants a job has found one that best fits their strengths and skillsets. We are determined to help you educate yourself on the supports that exist and how to best advocate for you or your loved ones needs in the workplace.
Fragile X Advocacy Newsletter – October 2024
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Marner Family Hosts 5th Annual Quad Cities Fragile X Golf Outing
The annual QC Fragile X golf outing, hosted by the Marner family, has been an incredibly inspiring demonstration of support. Thank you Andrea and Kevin - and your many supporters over the past five years!
A Reflection on the CEO Commission’s 2024 Hill Day
NFXF Executive Director, Hilary Rosselot, and Advocacy Ambassador, Dillon Kelley, attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September 2024. It was an inspiring, action-packed few days, and they are excited to share more about their experience and why it matters to the Fragile X community.
A Global Fragile X Community
The NFXF has played a key role in the global community of Fragile X families and professionals throughout the entirety of its existence, including working in partnership and alongside with many other Fragile X patient advocacy organizations, clinicians, and researchers.
The 2024 RJH Summer Scholar Presentations Are Now Live!
We asked our 2024 NFXF-funded Randi J Hagerman Summer Scholars to summarize their summer project in a 15-minute video presentation, and here they are!
Pharmacogenomics and the Fragile X Community: Interest and Prior Understanding
Researchers at the University of Alabama are looking for members of the FX community to take their online survey so they can explore the knowledge & opinions of the FXS community on pharmacogenomic testing.
Lunch & Learn Series: “Mosaicism Type and Cognitive & Behavioral Functioning Among Males with FXS” and “Sleep Problems in FXS: Cross-Sectional Analysis of a Large Cohort”
Dr. Elizabeth Berry-Kravis and Dr. Walter Kaufmann joined us for a 45-minute webinar where they presented on two of the "top 10 most-cited articles" in the American Journal of Medical Genetics Part A. Presentations were then followed by a moderated Q&A.
Panel Discussion — Gene Therapy
As gene therapies continue to enter rare disease and Fragile X spaces, we know that our community has become increasingly curious about what this means for Fragile X. At the 19th NFXF International Fragile X Conference, experts shared their thoughts on gene therapies and their future in the Fragile X world.