National Fragile X Foundation

? Last Chance to Join the RECONNECT Trial! ? Enrollment for the RECONNECT clinical trial is almost full! Don't miss out on the chance to be part of groundbreaking research that could help shape the future of treatment for Fragile X syndrome. The RECONNECT trial is still open for enrollment for ?individuals 3-29 years old? living with FXS. You can participate in-person or completely from the comfort of your home! Click the link to learn more about the RECONNECT trial and secure your spot now! ?? https://hubs.ly/Q03c4b0_0 #FragileX #FragileXResearch #FragileXAwareness #ResearchMatters

Important Update: Potential 57% Reduction of Funding for the Congressionally Directed Medical Research Programs (CDMRP). The continued resolution (CR) is set to expire March 14, 2025, and the extension currently up for a vote in the Senate is raising significant concerns for research funding within the Congressionally Directed Medical Research Program (CDMRP). Read more about this potential impact: https://hubs.ly/Q03bWTLJ0 #fragilex #fragilexresearch

?? Fragile X Research in the News! ??? Yesterday, Kaerus Bioscience announced that it has successfully completed its Phase 1 trial and demonstrated 'proof of mechanism' with their novel BK channel modulator, KER-0193, being developed for Fragile X Syndrome! This is a huge step forward in the pursuit of better treatments! ?? Read more about this exciting development from Kaerus Bioscience here: https://hubs.ly/Q03byDfH0 #FragileX #FragileXResearch #Biotech #KER0193 #KaerusBioscience

We're thrilled to announce that the 2025?Randi J. Hagerman Summer Scholar Research Awards?are now open! The Summer Scholars program is dedicated to advancing our understanding of Fragile X while offering a unique training opportunity for aspiring clinicians, researchers, and scientists. Dr. Hagerman’s incredible contributions to the Fragile X community, her commitment to collaboration, and her passion for mentoring the next generation of Fragile X professionals are truly inspiring. This program is a reflection of that legacy, and we can't wait to see all the new applicants this year! Each year, the NFXF supports one or more undergraduate or graduate student research projects up to $5,000 each. Research projects can focus on Fragile X syndrome (FXS), the Fragile X premutation, Fragile X-associated tremor/ataxia syndrome (FXTAS), or Fragile X-associated primary ovarian insufficiency (FXPOI). Learn more and apply at https://hubs.ly/Q03byDdH0

Thank you Shionogi Inc. (U.S.) for supporting the Fragile X community as a NFXF 2025 Corporate Sponsor. https://lnkd.in/gPH6sEYu #FragileX

Join us as we host a Q&A panel of genetic counselors who specialize in Fragile X. Susan Howell, Rena Pressman, Marisa Vomvos, and trainee, Kate Shelly will address the intricacies of the genetics of Fragile X. Our panelists will cover topics like genetic testing and the heritability/familial impact of Fragile X, carrier screening and panels, and family planning. Learn more and register at https://hubs.ly/Q039gW6f0 #FragileX #FragileXAwareness

Thanks to the amazing 133 advocates from 25 states + DC for joining us for the NFXF 21st Advocacy Day! There was so much energy and passion in the training session and on Capitol Hill. We heard from Fragile X researchers about the importance of federal research dollars and the advancements they have made possible. We practiced telling our stories and we set advocates up for success by creating an inclusive, supportive environment that encouraged every voice. For those of you who could not join us in person, you can still advocate from home! Utilize our action alerts to reiterate the importance of NIH funding (https://hubs.ly/Q038tMbv0) and Medicaid (https://hubs.ly/Q038v4Sn0). Thank you for using your voices to share our collective asks to support the Fragile X community. You are Xtraordinary! #AdvocacyDay2025 #FragileXAwareness #FragileX

Thank you to Shionogi Inc. (U.S.) for joining us for NFXF Advocacy Day to advocate for federal funding for research and legislation to benefit the Fragile X community. We value your partnership!

?? Clinical Trial Opportunity for Adult Men with Fragile X Syndrome ?? Cincinnati Children's Hospital Medical Center is looking for adult males ages 18-40 living with Fragile X syndrome to participate in a unique, single-dose clinical trial. This trial aims to understand how Gaboxadol affects the brain's response to sound. This study also involves both in-clinic and in-home visits and aims to assess the feasibility of conducting research in the home. Interested? Know someone who might be? Click here to learn more: https://hubs.ly/Q037rWQ80 #FragileX #ClinicalTrial #ResearchOpportunity

February is??Rare Disease Month??and a great time to consider whether your loved one is eligible to participate in a Fragile X syndrome clinical research program! The EXPERIENCE clinical studies by Shionogi (formerly known as the Tetra studies or the studies of BPN14770 in Fragile X syndrome) are still enrolling and are looking for: ?? male participants ?? ages 9-45 y/o ?? living with Fragile X syndrome ?? with confirmed FMR1 gene mutation (≥ 200 CGG repetitions) Learn how you can get involved here: https://hubs.ly/Q034vyCV0