We’re proud to feature Kara, an FXS mom and member of our board of directors, in the next inspirational caregiver video, developed with Shionogi. 👉Hear how self-advocacy has defined their family. hubs.ly/Q03x98yq0 #FragileX #FragileXsyndrome #FragileXawareness

Our Fragile X caregiver stories created with Shionogi continue with Diane, mom to eight, four of whom live with #FragileXSyndrome. Diane shares what she loves most about her “beautiful chaos” and the ways their family creates happiness. #FragileX #FragileXawareness

🧠 STUDY OPPORTUNITY 🧠 NU's Neurodevelopmental Diversity Lab is seeking individuals w/ FXS (age 12+) & moms w/ the FMR1 premutation to explore language & cognitive abilities. 📍Evanston, IL + remote 🎯Fun brain-based tasks 🔗hubs.ly/Q03yBDbn0 📧[email protected]

We have so much to learn from our longstanding community members like Denise, who leads our Western MA Chapter. Hear how much has changed since her son was diagnosed 30 years ago as part of our caregiver stories, created with Shionogi. hubs.ly/Q03zpQGr0 #FragileX

What is the Fragile X premutation? This 90-sec animated explainer breaks it down—what it is, who it affects, and why it matters. 🧬 🎥 Watch now: hubs.ly/Q03zpzzd0 #FragileX #FXTAS #FXPOI #GeneticAwareness

📢 Opportunity for Fragile X Caregivers Seeking 3 caregivers of children under 18 living with FXS (male or female) to share their story in a 1-hour virtual interview 💻 🗓 Interviews happening this month 💵 $100 "thank-you" Interested? 📨 Email [email protected]

📢 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

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 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

🎥 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 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

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.

👀 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

🌟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

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

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 🌟 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

🌟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

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

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