📢 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 christineb@charter.net.

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: #FragileX #FXTAS #FXPOI #GeneticAwareness

What do you want to know?.

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. #FragileX.

🧠 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.🔗📧ndl@northwestern.edu

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

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. #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:

⏳ 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