Today, Taysha Gene Therapies made several exciting announcements about the progress of their REVEAL Phase 1/2 trial in Canada and the future study of their gene therapy, TSHA-102. To read their full press release, click here. Key Facts: Updates on the first adult patient dosed in the REVEAL Phase 1/2 trial in Canada: TSHA-102 was … Read More
My Rett Ally, a web application powered by mejo, is specifically designed for Rett syndrome patients and families to simplify and enhance care coordination. The International Rett Syndrome Foundation (IRSF) is pleased to announce the launch of the My Rett Ally web app, a valuable addition to the resource toolkit for parents and caregivers of … Read More
BIG NEWS for our international Rett syndrome community! Today, Acadia Pharmaceuticals announced they have acquired the rights to make trofinetide available for the treatment of Rett syndrome across the globe. READ THE PRESS RELEASE This is an essential starting point in ensuring ALL Rett families have access to this treatment. Acadia already retains the rights … Read More
By Samantha Brant, Family & Community Engagement Manager, and mom to Macy As I returned home from this year’s RettAway at Morgan’s Inspiration Island, my heart swelled with not only pride but warmth. I attended the last RettAway in 2017 as simply a parent to a 3-year-old little peanut, Macy. And I took so much … Read More
The International Rett Syndrome Foundation (IRSF), a mission-driven advocacy foundation focused on funding research and supporting families impacted by Rett syndrome, today announced the expansion of its Board of Directors. Mary Engel, Laura Stoppel, and Steve Wood have been appointed to the IRSF Board, effective July 1, 2023. “We are delighted to welcome these new … Read More