NFXF

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

📣 ATTN Parents: Research Opportunity! 📣 Do you have a child 2–12 y/o with a genetic syndrome & intellectual disability? Join the WINGS Study — a 100% remote intervention helping parents strategize how to manage challenging behaviors! Learn more here 👉 hubs.ly/Q03ptdMv0

🧠 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’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

Alongside Shionogi, we’re spotlighting caregivers this #FragileXAwarenessMonth, as they have unique experiences. Jessie, mother of 5 with #FragileXSyndrome, shares her experience and what she hopes the future of care looks like. #FragileXawareness #FragileX

Join us and Shionogi in celebrating caregivers, including Rene, this #FragileXAwarenessMonth. Together with parents like Rene, we’re working to increase understanding about living with #FragileXSyndrome. #FragileXawareness #FragileX

In partnership with @ShionogiUS, this #FragileXAwarenessMonth, we’re amplifying caregiver voices like Ilana and Adam. Dedicated to advocacy, they are champions for their teenage son living with #FragileXSyndrome. Hear their story: hubs.ly/Q03vm8TC0

⏳ LAST CHANCE: Research Opportunity for Parents/Guardians ⌛ 🧬Have you received genetic counseling for your child’s Fragile X syndrome diagnosis in the past 5 years? You may be eligible to participate! ⏰Takes ~15 min 📅Survey closes 7/7/25 🔗: hubs.ly/Q03r1bNC0

Meet RJH Summer Scholar: ⭐Shelby Dauterman⭐ A 2nd yr grad student, Shelby is studying neurovascular coupling in FXS under the mentorship of Dr. Craig Erickson at University of Cincinnati. 👏 Congrats on the 2025 Randi J. Hagerman Award, Shelby! 🔗 hubs.ly/Q03tCGd00

Meet RJH Summer Scholar: ⭐Tanvi Kamra⭐ A sophomore undergrad at Emory, Tanvi will study multiomic analysis of postmortem brains in Fragile X-associated disorders w/ her mentor Dr. Nisha Raj. 👏 Congrats on the 2025 Randi J. Hagerman Award, Tanvi! 🔗 hubs.ly/Q03r1GdC0

‼️ REMINDER: Research Study for Parents/Guardians 🧬Have you received genetic counseling for your child’s Fragile X syndrome diagnosis in the past 5 years? You may be eligible to participate! ⏰Takes ~15 min 📅Survey closes 7/7/25 🔗: hubs.ly/Q03r1gtm0

🧠 USC’s Neurodevelopmental Disorders Lab is studying early development in infants & children with FXS or the FMR1 premutation (ages 3–36 mos). The study includes play-based visits at USC or in your home, with flexible scheduling. Interested? Learn more:hubs.ly/Q03r_qkm0

Meet RJH Summer Scholar: ⭐Susana Lopez-Ignacio⭐ A 2nd-year grad student at @CUAnschutz, Susana is studying cell-type specific X-inactivation in FXTAS under Dr. Caroline Dias. 👏 Congrats on the 2025 Randi J. Hagerman Award, Susana! 🔗 Learn more: hubs.ly/Q03r1Cfq0

🔔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/Q03rtW0H0

🔬 NEW Research Opportunity for Parents/Guardians🔬 🧬Have you received genetic counseling for your child’s Fragile X syndrome diagnosis in the past 5 years? You may be eligible to participate! ⏰Takes ~ 15 minutes 📅Survey closes 07/07/2025 🔗: hubs.ly/Q03r1hqM0

🎉 Congrats to the 2025 Summer Scholars! 🎉 🌟 Susana Lopez-Ignacio – U of Colorado 🌟 Tanvi Kamra – Emory 🌟 Shelby Dauterman – U of Cincinnati These rising stars will spend the summer advancing #FragileX research under expert mentorship! Learn more 👉 hubs.ly/Q03qbW3V0

Fragile X is once again included in the FY25 Peer-Reviewed Medical Research Program (PRMRP) funding opportunities. Join our webinar with PRMRP Interim Program Manager, Dr. Kathryn Argue, on May 28th at 2 PM ET. Learn more at hubs.ly/Q03nZQjV0 #fragilex #research

🎉Enrollment for the RECONNECT trial is now closed! 🎉 Huge thanks to the FXS community—participants, families & advocates. This milestone couldn't have been reached without you! Click below to read a message to the community from Harmony Biosciences 👇 hubs.ly/Q03lkxcv0

Fragile X affects all races & ethnicities—but we know that not all families are being reached. We're listening. Take our survey on belonging, so we can work to build a more inclusive FX community. Because everyone deserves to feel like they belong. 💚 🖱️ hubs.ly/Q03kmBHL0

ONLINE study opportunity! Researchers are looking for adults to take a quick survey on post-school expectations for individuals living w/ IDD, including Fragile X syndrome. ✅ Takes ~10 min ✅ Do it anytime, even on your phone! 🙏 Your voice matters! 🔗 hubs.ly/Q03hvTZg0