Fragile X Advocacy Newsletter
Read and share the first edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
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RECONNECT Trial Announces New AT-HOME Option for Participation
RECONNECT Trial Announces New AT-HOME/VIRTUAL Option for Participation
Summary of the Fragile X Syndrome Basic Science Research session at the NFXF’s 18th International Fragile X Conference
Dr. Anubhuti Goel summarizes the Fragile X Syndrome Basic Science Research session at the NFXF's 18th International Fragile X Conference.
Summary of the Fragile X Premutation Panel Discussion at the 18th International Fragile X Conference
Dr. Connor Maltby, a 2022 Jr. Investigator, summarizes the Fragile X Premutation panel discussion at the NFXF's 18th International Fragile X Conference.
Summary of the Fragile X Messenger Ribonucleoprotein (FMRP) Series at the 18th NFXF International Conference
Dr. Talia Thompson summarizes the Fragile X Messenger Ribonucleoprotein (FMRP) series from the 18th NFXF International Conference
Summary of the Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome Panel Session
Dr. Michelle Tosin, a 2022 NFXF Junior Investigator, summarizes the Diagnosis and Treatment of Fragile X-associated Tremor Ataxia Syndrome session at the 18th International Fragile X Conference.
Summary of the Research Landscape Panel at the 18th International Fragile X Conference
Dr. Kate Shelly, a 2022 Jr. Investigator, summarizes the Research Landscape panel at the NFXF's 18th International Fragile X Conference.
Summary of the Fragile X Premutation Basic Science Research Session at the NFXF 18th International Fragile X Conference
Dr. Carolyn Yrigollen summarizes the Fragile X Premutation Basic Science Research session at the NFXF's 18th International Fragile X Conference.
Tetra Therapeutics: An Interview with Dr. Liz Berry-Kravis
Learn more about the ongoing Tetra trials in this 2-minute video with Dr. Liz Berry-Kravis
Antisense Oligonucleotide (ASO) therapy being explored in Fragile X syndrome!
A publication was released this week summarizing one lab’s discovery that could lead to a future treatment for Fragile X- ASO therapy.
The NFXF Heartland Chapter Hosts 8th Annual “Bike To X Out Fragile X”
The 8th Annual Bike to X Out Fragile X took place on a beautiful Saturday, June 3, 2023.
Allos Pharma Inc. Receives FDA Guidance and Support for their Phase 3 Trial of Arbaclofen in Fragile X Syndrome
Allos Pharma Inc. received invaluable FDA feedback on the design of their Phase 3 trial for arbaclofen for the treatment of Fragile X syndrome.
The effect of college degree attainment on neurodegenerative symptoms in genetically at-risk women
Researchers at the University of Wisconsin explored the relationship between obtaining a college degree and the manifestation of the neurodegenerative symptoms of FXTAS among women at elevated genetic risk.
Fragile X-associated tremor/ataxia syndrome rating scale: Revision and content validity using a mixed method approach
Researchers across several institutions set out to develop a revised version of the FXTAS-RS designed to specifically assess FXTAS motor signs.