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:

⏳ 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 . 🔗:

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!. 🔗

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!. 🔗

‼️ 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 . 🔗:

🧠 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:

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:

🔔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! 👉

🔬 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. 🔗:

🎉 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 👉

📣 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 👉

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 #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 👇.

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. 💚. 🖱️

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!. 🔗

⏰Deadline Approaching⏰. Are you an undergrad or grad student researching #FXS, #FXTAS, #FXPOI, or the FMR1 premutation? Apply for up to **$5,000** in funding!. Applications for the 2025 RJH Summer Scholar Research Award are due April 25!. Apply here➡️

WE WANT TO HEAR FROM YOU! . Take the ✳️Belonging Survey✳️ today! . *Belonging* is about feeling valued & accepted in a group. Help us understand what "belonging" means to the Fragile X community, so we can ensure that everyone feels like they belong. 🖱️

🔬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:

🧠 Researchers at Massachusetts General Hospital are exploring brain activity during sleep & sensory processing in Fragile X syndrome 🧠. Who: Males w FXS, 12-19 y/o.Where: Fully remote OR Lexington, MA.Commitment: 1-2 visits over 1-3 weeks. Interested?🔗

🚨 Calling all caregivers! 🚨 . Researchers at University of Rochester need your input to help develop a tool that will measure the health, symptoms, & challenges of individuals living with FXS. 🗣️Your voice matters!. Learn more & contact the study team: