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.
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.
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.
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.
This study is important for later-diagnosed individuals as it creates successful predictive models that can identify cases five years earlier than clinical diagnosis.
Data from 8 unique studies speaks to the necessity of early identification of FXS, which leads to earlier, effective medical and non-medical interventions.
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.
Two important videos from Dr. Craig Erickson who discusses COVID-19 vaccines for individuals living with Fragile X premutations and full mutations, plus a second video on medications and Fragile X.
When we first launched the registry in November 2020, we weren’t yet able to accept non-U.S. registrants. There’s a lot of regulations and standards to work through on a project like this, but now we are truly living up to our name!
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.
Cortical Gyrification and Its Relationships With Molecular Measures and Cognition in Children With the FMR1 Premutation
Jun Yi Wang and the study team out of the UC Davis MIND Institute are interested in learning more about the premutation carrier condition in relations to brain development and its impact on cognition. These mental processes impact the higher-level functions of the brain including language, learning new things, and making decisions.
Telehealth-Enabled Behavioral Treatment for Problem Behaviors in Boys With Fragile X Syndrome: A Randomized Controlled Trial
Dr. Hall and his team at Stanford University are learning about potential behavioral treatments for problem behaviors. Previous research suggests that problem behaviors, like aggression, self-injury, and property destruction, may occur at higher rates in individuals with FXS.
A Genotype-Phenotype Study of High-Resolution FMR1 Nucleic Acid and Protein Analyses in Fragile X Patients with Neurobehavioral Assessments
We know that FMRP is expressed throughout our body, including our blood, tissues, and brain. Levels of FMRP in the blood of patients with FXS have been positively correlated with cognitive performance, specifically intelligence quotient and adaptive behavior.