The NFXF Blog
PFDD Meeting Community Forum
The Patient-Focused Drug Development (PFDD) meeting on Fragile X syndrome is just around the corner! We need caregivers and self-advocates to participate to make this a valuable meeting. This will help you understand what to expect and what the goal is and how to share your story.
What Does a New Congress Mean for Advocacy
As the Biden Administration takes office and Congress switches control, what does it mean for NFXF Fragile X Advocacy efforts?
Is the COVID-19 Vaccine Safe for Individuals with Fragile X?
Dr. Craig Erickson, director of the Cincinnati Fragile X Research and Treatment Center at the Cincinnati Children's Hospital, received his first dose of the COVID-19 vaccine tells us why it’s safe.
Survey: Share Your Experience With Telehealth and Services During COVID
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
Cortical Gyrification and Its Relationships With Molecular Measures and Cognition in Children With the FMR1 Premutation
RESEARCH RESULTS ROUNDUP — The premutation carrier condition in relation to brain development and its impact on mental processes involved in learning and understanding.
Telehealth-Enabled Behavioral Treatment for Problem Behaviors in Boys With Fragile X Syndrome: A Randomized Controlled Trial
RESEARCH RESULTS ROUNDUP — The trial compared children with FXS who received functional communication training via telehealth to those who received treatment as usual, or none.
A Genotype-Phenotype Study of High-Resolution FMR1 Nucleic Acid and Protein Analyses in Fragile X Patients with Neurobehavioral Assessments
RESEARCH RESULTS ROUNDUP — First study to integrate FMR1 DNA, RNA, and protein analyses and to correlate these molecular measures with multiple neurobehavioral parameters.
Fragile X Advocacy in 2021
Gregg Harper discusses NFXF advocacy successes from 2020, 2021 Advocacy Day, and more.
The good stuff from 2020 (no really there is some)
I like to talk about #pandemicPositive – there is plenty that has been hard(er) this year, but we have also seen lots of good. So, I polled my fellow staff members for some examples of the impact we all made this year through your support.
Webinar: Adults in Fragile X Syndrome
Dr. Elizabeth Berry-Kravis discusses the value of the FORWARD database for understanding problems that face adults living with Fragile X syndrome. We also talk about how families of adults can contribute to FORWARD and our understanding of adults with FXS by doing a research-only remote visits with a FORWARD clinic to increase the data pool for adults with FXS in FORWARD.
Study: Behavioral and Cognitive Inflexibility in Fragile X Syndrome
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
Allos Pharma Inc Announces the Exclusive License Rights on Arbaclofen in Fragile X Syndrome
Allos Pharma Inc, a late-stage pharmaceutical company developing therapeutics for neurodevelopmental disorders, has announced the exclusive license rights on arbaclofen in fragile X syndrome (FXS).
