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
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
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
The International Rett Syndrome Foundation (IRSF), a mission-driven advocacy foundation focused on funding research and supporting families impacted by Rett syndrome, today announced the expansion of its Board of Directors. Mary Engel, Laura Stoppel, and Steve Wood have been appointed to the IRSF Board, effective July 1, 2023. “We are delighted to welcome these new … Read More
We are excited to share news from two pharmaceutical companies working on potential treatments and cures for Rett syndrome. Taysha Gene Therapies Taysha Gene Therapies shared that they are encouraged by the initial clinical observations of the first adult patient dosed in their TSHA-102 REVEAL Phase 1/2 gene therapy trial in Canada. Further clinical updates … Read More
We’re excited to share that today Neurogene announced the locations and began enrolling for the first U.S. Phase 1/2 clinical trial of their investigational gene therapy, NGN-401. Enrollment at Texas Children’s Hospital begins today, with enrollment at Children’s Hospital Colorado and Boston Children’s Hospital anticipated to open soon. The trial will enroll five (5) females aged … Read More