Anna De Sonia
Anna joined the NFXF in 2024. She found her way to the Fragile X community through her many years of work as a clinical research coordinator at Rush University Medical Center in Chicago. There she worked on research in the pediatric neurology division, with a special interest in Fragile X. Anna earned her bachelor’s in psychology and obtained a clinical research coordinator (CCRC) certification through the ACRP. She likes to take time to enjoy life’s simple pleasures, loves traveling and exploring new cultures, and spending quality time with her dog, family and friends.
More from the Author
Watch the 2026 Summer Scholars research project presentations by Erin Burnett, Iris Chen, Nura Salem, and Tim Smith.
Congratulations to our 2026 Junior Investigators! We are SO excited to have such brilliant minds in the Fragile X field. The NFXF is proud to support these Junior Investigators and build the next generation of Fragile X experts.
Shionogi provides updates on the EXPERIENCE adult and adolescent studies in Fragile X syndrome.
CONNECTA Therapeutics is taking a new approach to Fragile X syndrome treatment by boosting the brain’s natural ability to reconnect and adapt.
Harmony Biosciences recently announced results from its Phase 3 RECONNECT study of ZYN002, a cannabidiol (CBD) gel being tested for Fragile X syndrome.
Congratulations to 2025’s three NFXF Summer Scholars. Meet Susana Lopez-Ignacio, Tanvi Kamra, and Shelby Dauterman!
We’re thrilled to spotlight a major new review article recently published in the New England Journal of Medicine (NEJM) – The Spectrum of Fragile X Disorders by Randi J. Hagerman and Paul J. Hagerman.
The Belonging Project aims to intentionally extend our reach to underserved and underrepresented communities across the United States. We have 2025 updates from three Fragile X clinics and our belongingness survey, and we will keep you updated as we continue to move forward.
Harmony Biosciences shares that they have reached their enrollment goal for the Phase 3 RECONNECT trial and screening into the trial has officially closed.
Kaerus Bioscience has completed its Phase 1 trial with its novel BK channel modulator, KER-0193, being developed for Fragile X Syndrome!
Although there are currently no options for approved or experimental gene therapies for FXS, gene therapies in other diseases and conditions do exist and are helping people today.
You may have heard about EXPERIENCE (Evaluation of Fragile X Experience in Cognition Expression) clinical trials as the Tetra studies or the studies of BPN14770 in Fragile X syndrome. EXPERIENCE is now being managed by Shionogi and clinical trial sites across the U.S. are still enrolling qualified male participants aged 9-45.
The Belonging Project aims to intentionally extend our reach to underserved and underrepresented communities across the United States. We have updates from three Fragile X clinics and our belongingness survey, and we will keep you updated as we continue to move forward.
Make a difference and take the Belonging in FX Survey today! Belonging is when each member of a community is treated and feels like a full member of that community. Sharing your experiences will help us close the gap in diversity, promoting inclusion and belonging within the Fragile X community.
Each type of gene therapy has its own unique applications, benefits, and challenges. Although there are currently no FDA-approved gene therapies for FXS, ongoing research continues to expand the possibilities in this exciting field of medicine, and what seemed before like a lifetime away, is a much closer reality.
You Spoke, We Listened: The Completely At Home RECONNECT Clinical Trial –Participate in Research Without the Stress of Traveling
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.
The National Institute of Health (NIH) recently released a Request for Applications (RFA) for research in Fragile X syndrome (FXS) and FMR1-associated conditions.
Research Summary: This research was very revealing. Currently, we do not have accurate methods to predict who will develop FXTAS and who will not, or when the disease will start.
Research Summary: The results found from the EEGs in both the FMR1 KO mice and humans with FXS are extremely important for the future of FXS research because they show a measurable commonality between the two very different species.
Research Result: Overall, the study results suggest a possible treatment to restore FMRP in individuals with FXS. These findings also suggest that abnormal RNA sequencing events identified in white blood cells may serve as powerful biomarkers for FXS.