Our 2022 Rett Gazette is NOW available!Find out how we are continuing to accelerate vital, innovative research while helping families thrive, no matter where they are on their Rett Journey. This year’s issue highlights how a world without Rett syndrome requires a powerful synergy between families and research, and how we can go ALL IN, together, to make that vision a reality.
We’ve also included our 2021 Impact Report so that you can see how donations are used to empower families and accelerate full spectrum research.
2021: Fall 2020: Summer 2019: Spring | Fall
2018: Spring | Fall 2017: Fall | Spring 2016: Summer
2015: Winter | Summer 2014: Winter | Summer 2013: Winter | Spring
October 18, 2021 – HIVE Networks and IRSF Partner to Advance Research and Treatment for Rett Syndrome
September 10, 2021 – IRSF Appointed to NHC Standard of Excellence Program
July 27, 2021 – International Rett Syndrome Foundation Appoints New Board Member
May 4, 2021 – IRSF Recognizes 15 Clinics With New Center Of Excellence Awards
July 15, 2020 – Rettsyndrome.org Launches Rett Research Ready™ and myRett Trial Finder
September 17, 2019 – Rettsyndrome.org Announces New Chief Science Officer with Rett Syndrome Connection
July 29, 2019 – Rettsyndrome.org Appoints New Board Members
June 4, 2019 – Rettsyndrome.org Funds Research to Provide Hope for Females and Males Affected by MECP2 Mutation
May 3, 2019 – Rettsyndrome.org Appoints Joseph Horrigan, MD to Board of Directors
March 27, 2019 – Postive Phase 2 Study Results of Trofinetide in Pediatric Rett Syndrome Published in Neurology
March 18, 2019 – Anavex Life Sciences Announces First Patient Dosed in Phase 2 Clinical Trial of ANAVEX®2-73
December 7, 2018 – International Rett Syndrome Foundation Receives Highest Honor
October 19, 2018 – FDA Approves Phase 2 Clinical Trial of ANAVEX®2-73 in Patients with Rett Syndrome
September 7, 2018 – Stepfather cycling across country to draw awareness for rare Rett syndrome
July 23, 2018 – New Mouse Model in Rett Syndrome Reveals Promise
July 13, 2018 – Rettsyndrome.org Announces Timothy Benke, MD, PhD, to Role as Rettsyndrome.org Medical Advisor
These concise reports highlight our annual accomplishments in research, fundraising and family empowerment.
2021 (Coming Soon) | 2020 | 2019 | 2018 | 2017 | 2016 | 2015 | 2014
A First in Rett Syndrome! Taysha Gene Therapies announced today that the first Rett syndrome patient has been dosed with the investigational gene therapy, TSHA-102, in a clinical trial for females 18 and older being run out of Montreal, Canada. Read their press release and full community update below. ———————- June 5, 2023 Dear Rett … Read More
This first-ever treatment is approved for individuals with Rett syndrome. (Updated March 19, 2023) On March 10, 2023, Acadia Pharmaceuticals announced that their investigational drug, Trofinetide, has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of Rett syndrome. The drug, marketed under the name DAYBUE™, is expected to be commercially … Read More
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
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
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