NFXF

Research Opportunity for Parents! Are you a parent of a 2-12 y/o with a genetic syndrome & intellectual disability? Join the WINGS Study, a remote intervention helping parents develop strategies for managing challenging behaviors! Learn more: hubs.ly/Q047rXxT0

Fragile X has been included in the FY26 PRMRP authorized topic list, which ensures that researchers can apply for DoW awards supporting Fragile X research. Grateful to Senators Cindy Hyde-Smith, Cory Booker, Roger Wicker and Alex Padilla for supporting this effort.

📣 Mothers Living with Full Mutation Fragile X Researchers at University of South Carolina are studying aging to improve diagnosis & support. Assessments include questionnaires & genetic testing. No travel required & compensation provided! Learn more 🌐 hubs.ly/Q043mPPG0

PIXI Study now recruiting 👶 PIXI offers 20 telehealth early intervention sessions for families of infants with Fragile X syndrome. Through the study, you can get support understanding your child’s diagnosis + coaching on early strategies. Learn more 🔗 hubs.ly/Q043zD5m0

The Fragile X community thanks @SenMcConnell @ChrisCoons @SenCapito @SenatorBaldwin @CoryBooker @SenHydeSmith @SenAlexPadilla and their committees for support in securing funding for FX research. Your bipartisan leadership is recognized & appreciated by the Fragile X community.

The Fragile X community thanks @Robert_Aderholt, @rosadelauro, @RepJoeCourtney, Congressman Chris Smith, and their committees for their support in securing funding for Fragile X research. Your bipartisan leadership is recognized and appreciated by the Fragile X community.

Are you a caregiver of a female between 6-12 y/o? Researchers @ NY State Institute for Basic Research need your help! 🖱️Take two short surveys that explore physical symptoms — like pain or fatigue — in girls with & without FMR1 gene variations. More ➡️ hubs.ly/Q03Sw94S0

Caregiver of a female, 6-12 years old? Researchers at the NY State Institute for Basic Research need your help! 🖱️Take two short surveys that explore physical symptoms — like pain or fatigue — in girls with & without FMR1 gene variations. Learn more: hubs.ly/Q03SwcjP0

🌟Research Opportunity for Caregivers🌟 If you care for someone w/ Fragile X syndrome, we want to hear from you! Researchers at Baylor College of Medicine are studying caregiver experiences with clinics. 🖊️ Take a 15–30 min survey & help improve care! 👉 hubs.ly/Q03NspK20

Spotlight on 🌟 Shelby Dauterman🌟 Meet Shelby, one of our 2025 RJH Summer Scholars! Her project explores neurovascular coupling in Fragile X syndrome to help inform new treatment strategies. 🎥 Watch her presentation here: hubs.ly/Q03NLx320 #FragileX #StudentResearch

Spotlight on 🌟 Tanvi Kamra 🌟 Meet Tanvi, one of our 2025 RJH Summer Scholars! Her project explores postmortem brain data to better understand Fragile X-associated conditions. 🎥Watch her presentation here: hubs.ly/Q03NKVdD0 #FragileX #StudentResearch #FragileXResearch

Spotlight on 🌟 Susana Lopez-Ignacio 🌟 Meet Susana, one of our 2025 RJH Summer Scholars! Her summer project explores how X-chromosome inactivation affects FXTAS. 🎥 Watch her 15-minute presentation here: hubs.ly/Q03NtvT30 #FragileX #StudentResearch #FragileXResearch

🌟Research Opportunity for Caregivers🌟 If you care for someone w/ Fragile X syndrome, we want to hear from you! Researchers at Baylor College of Medicine are studying caregiver experiences with clinics. 🖊️ Take a 15–30 min survey & help improve care! 👉 hubs.ly/Q03NslFh0

👀 on CONNECTA Therapeutics! This biotech company is taking a fresh approach to #FragileX research! Their lead medicine aims to boost the brain’s ability to form & strengthen connections. Read more about CONNECTA & what's next for their research: hubs.ly/Q03MZz1-0

Harmony Biosciences released top-line data results from their Phase 3 RECONNECT trial. While it's not the news we hoped for—the trial did not meet its endpoint—we appreciate the work Harmony and Zynerba did on this important potential treatment for #fragilexsyndrome.

🔔RESEARCH OPPORTUNITY FOR GIRLS w/ FXS🔔 Girls 8-12 living w/ FXS or ASD are invited to join a study by the Waisman Center & MIND Institute. The study includes: • 2 in-person visits over 2 yrs • language & behavioral testing Interested? More here! 👉 hubs.ly/Q03KM2jP0

🎥 The 2025 Summer Scholars Presentations are LIVE! Meet Susana Lopez-Ignacio, Tanvi Kamra & Shelby Dauterman as they share their Fragile X summer research & experiences through short videos 🌟 👉 hubs.ly/Q03JCcrF0

🌟Research Opportunity for Caregivers🌟 If you care for someone w/ Fragile X syndrome, we want to hear from you! Researchers at Baylor College of Medicine are studying caregiver experiences with clinics. 🖊️ Take a 15–30 min survey & help improve care! 👉 hubs.ly/Q03HN0hp0

Servier, an independent global pharmaceutical group focused on advancing treatments in rare conditions, has acquired a potential new treatment for Fragile X syndrome! Read the full press release here 👇 hubs.ly/Q03HCp4F0 #FragileXSyndrome #Research

📢 Research Opportunity! Cincinnati Children’s Hospital is testing at-home EEG visits for Fragile X syndrome 🧠🏡 Why it matters: Validating at-home research makes participation more inclusive, accessible & comfortable for families. Learn more 👉 hubs.ly/Q03FP68T0