Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 25
Announcing FY 2025 federal research funding opportunities across six award categories available for all Fragile X-associated conditions and disorders.
Rhode Island Area Fragile X Family Night Out!
Rhode Island families gathered for a night out at a local restaurant on April 12th to share experiences and stories.
Harmony Biosciences RECONNECT Trial Reaches Enrollment Goal!
Harmony Biosciences shares that they have reached their enrollment goal for the Phase 3 RECONNECT trial and screening into the trial has officially closed.
Fragile X Advocacy Newsletter – April 2025
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
New Resources– Genetics of Fragile X
The Genetics of Fragile X can be confusing. We’ve developed a series of handouts to help explain how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
Help Us Reach the FORWARD-MARCH Enrollment Goal
We’re on a mission to enroll 600 participants with FXS born in 2003 through 2020. We’re halfway there and need your superhero help to hit our target!
Genetics of Fragile X — Webinar
Susan Howell, Rena Pressman, Marisa Vomvos, and Kate Shelly joined us for a one-hour Q & A discussing the Genetics of Fragile X.
ACTION ALERT:
Protect the Department of Education
Action Alert- Protect the Department of Education to ensure continued protections for all students, especially members of the Fragile X community.
Advocate for Fragile X From Home
Advocating from home is a key part of ensuring continued support for individuals with Fragile X. Let’s work together to make our voices heard!
Potential Impact of the Continuing Resolution on CDMRP/PRMRP Funding Opportunties
The Congressionally Directed Medical Research Program could face a 57% reduction in funding with the proposed continuing resolution.
ACTION ALERT:
Contact Congress Securing NIH funding for Fragile X
We continue to see proposed changes this Congress that may have a significant impact on the Fragile X community. It’s more important than ever that your members of Congress hear directly from you — [...]
Kaerus Bioscience Completes Successful Phase 1 Trial, Demonstrating Promise for KER-0193 BK Channel Modulator for Fragile X Syndrome
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!
Welcome Class of 2025 Board Members
Executive Director Hilary Rosselot welcomes the incoming class of 2025 Board Members. We look forward to working together to serve the entire Fragile X community.
ACTION ALERT:
Contact Congress About the Importance of NIH Research Funding for Fragile X
We are seeing numerous proposed changes this Congress that would have a significant impact on the Fragile X community. It’s more important than ever that your members of Congress hear directly from you — [...]
ACTION ALERT:
Advocate for Medicaid and the Fragile X Community
Action Alert- Advocate for Medicaid protection and the Fragile X community.