Rett Blogs

Recent NEWS & Updates

IRSF Establishes Research Fund for Males with Rett Syndrome

Tuesday, February 21, 2023

The fund is established thanks to an inaugural gift from the Otis Family in honor of their son, Barrett. The Rett syndrome research landscape has never been more exciting. New clinical trials are underway in gene therapy, and we eagerly await the FDA’s decision about Trofinetide. But we know that families of males with Rett … Read More

Taysha Gene Therapies Provides Update on Expansion of TSHA-102 Study

Wednesday, February 1, 2023

READ TAYSHA’S LETTER TO THE RETT COMMUNITY DALLAS, Jan. 31, 2023 (GLOBE NEWSWIRE) — Taysha Gene Therapies, Inc. (Nasdaq: TSHA), a patient-centric, clinical -stage gene therapy company focused on developing and commercializing AAV-based gene therapies for the treatment of monogenic rare diseases of the central nervous system (CNS), today provided an update on the TSHA-120 program in giant axonal … Read More

IRSF Awards $4.4M in Rett Syndrome Research Grants

Tuesday, January 31, 2023

Our commitment to setting up the next wave of Rett breakthroughs continues with the largest annual investment in our Foundation’s history. By Dr. Dominique Pichard, IRSF Chief Science Officer We are entering new territory for Rett syndrome. Right now, the FDA is evaluating the first-ever potential treatment specifically targeting Rett syndrome, trofinetide. No potential treatment … Read More

Neurogene Announces First Rett Syndrome Gene Therapy Trial in U.S.

Monday, January 23, 2023

We’re excited to share that Neurogene announced today that the FDA approved their Investigational New Drug Application (IND) to launch a clinical trial for their gene therapy treatment NGN-401 in 2023 in pediatric females. This is the second gene therapy clinical study in Rett syndrome currently underway and the very first gene therapy clinical trial … Read More

IRSF Receives $500,000 Donation from Vezbi Super App

Tuesday, January 3, 2023

International Rett Syndrome Foundation (IRSF) is proud to announce that it is the recipient of a $500,000 donation from the Vezbi Super App as part of its Project Seva. Along with the donation, Vezbi will be creating custom Micro-apps and Communities for use by IRSF and the community of families impacted by Rett syndrome that … Read More