2nd Adult Patient Dosed in Taysha Gene Therapies Study of TSHA-102

Tuesday, September 26, 2023

Today, Taysha Gene Therapies announced that a 2nd adult patient has been dosed with TSHA-102 in their REVEAL Phase 1/2 trial of the investigational gene therapy in Canada. They expect to dose the 3rd adult patient and complete enrollment in this low-dose cohort by the end of this year, and plan to dose the first … Read More

Introducing My Rett Ally: A New Tool to Support Caregivers

Tuesday, July 18, 2023

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

Acadia Pharmaceuticals Acquires International Rights to Trofinetide

Thursday, July 13, 2023

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

RettAway Reflections

Tuesday, July 11, 2023

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