Carolyn and her husband John kicked off the Live Appeal at the NFXF International Fragile X Conference in July with a one-to-one matching challenge of up to $30,000.
Healx updates the Fragile X Community About their Fragile X Program and the IMPACT-FXS trial. The IMPACT-FXS trial is closed and Healx plans to open a new FXS trial in 2023.
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. It is important to understand how this pandemic era has impacted school-aged children with FXS so that we may continue to successfully navigate the changes that come with living through a pandemic and to understand what we can improve in the case of a future pandemic.
Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.
This study showed the significant impact that behavioral treatments can have on rates of challenging behaviors commonly exhibited by boys with FXS, particularly when parents are coached to implement the intervention with their child via telehealth.
Some caregivers and parents of individuals with FXS have given CBD supplements to the individuals they care for and learning about their insights and experiences is important. This was the first study to learn more about their observations and opinions regarding CBD to treat FXS.
Most individuals with FXS cannot state themselves that they are anxious and self-report is needed in current standardized assessments. The information analyzed in this study will result in the development of a measure where observable and quantifiable data on anxiety in those with FXS can become an outcome measure to be used in future research/trials.
Zynerba presented about their prior results and their current RECONNECT during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Healx Ltd presented about the IMPACT-FXS trial during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Asuragen presented about the progress of Fragile X molecular testing during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
Tetra Therapeutics presented about their prior results and current BPN14770 trials during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
AAP/CDC course, "Identification, Management, and Caring for Children and Adolescents with Fragile X Syndrome" will be available for pediatricians and other healthcare professionals through August 1, 2025, on the AAP PediaLink platform.
Watch this segment from Lifetime’s daily morning show, The Balancing Act, “Behind the Mystery of Fragile X Syndrome: A Genetic Disorder That Can Cause Learning and Behavior Challenges.”
This is the first time that Fragile X premutation carriers have been tracked in a longitudinal study. This study provides evidence for early markers of FXTAS that may be helpful in eventually identifying the best candidates for early, preventive intervention.
Jayne Dixon-Weber shares top takeaways from Barbara Haas-Givler's conference presentation strategies for improving executive functioning for girls with Fragile X syndrome
