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
We’re excited to share that today Neurogene announced that two pediatric patients have been dosed in their Phase 1/2 trial of investigational gene therapy NGN-401. For Neurogene’s full press release, click here. Key Facts: The first two female pediatric patients were dosed sequentially in the 3rd and 4th quarter of this year at Texas Children’s … Read More
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
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