Rett Gazette

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.


Previous Rett Gazettes

2021: Fall                          2020: Summer                  2019: Spring | Fall
2018: Spring | Fall            2017: Fall | Spring            2016: Summer
2015: Winter | Summer    2014: Winter | Summer     2013: Winter | Spring

Press Releases


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 – Launches Rett Research Ready™ and myRett Trial Finder

May 19, 2020 – International Rett Syndrome Foundation Receives Greater Cincinnati Foundation and United Way of Greater Cincinnati’s COVID-19 Regional Response Fund Grant


September 17, 2019 – Announces New Chief Science Officer with Rett Syndrome Connection

July 29, 2019 – Appoints New Board Members

June 4, 2019 – Funds Research to Provide Hope for Females and Males Affected by MECP2 Mutation

May 3, 2019 – 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 – Announces Timothy Benke, MD, PhD, to Role as Medical Advisor

Impact Reports

These concise reports highlight our annual accomplishments in research, fundraising and family empowerment.

2021 (Coming Soon) | 2020 | 2019 | 2018 | 2017 | 2016 | 2015 | 2014

Neurogene Announces First Pediatric Patients Dosed in US Gene Therapy Clinical Trial

Thursday, November 30, 2023

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

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