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.

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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

2021

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

2020

July 15, 2020 – Rettsyndrome.org 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

2019

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

2018

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

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 Expansion of Gene Therapy Clinical Trial

Monday, March 4, 2024

Today, Neurogene announced plans to expand and more rapidly enroll patients their Phase 1/2 clinical trial of investigational gene therapy NGN-401. For the full press release, click here. Key Facts: The study will now expand to include a total of 16 pediatric participants (age 4-10). Cohort 1 (low dose group) will increase from 5 to … Read More

Taysha Gene Therapies Adolescent & Adult Study Expanded to U.S.

Thursday, February 29, 2024

Today, Taysha Gene Therapies shared several exciting updates on their REVEAL Phase 1/2 clinical trial of investigational gene therapy TSHA-102: The study will now expand to include adolescent and adult patients in the U.S. (age 12+ protocol). The dosing of the first cohort (low dose) is complete in the adult study in Canada with clinical … Read More

My Rett Ally: Revolutionizing Care Management for Rett Families

Thursday, January 11, 2024

On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list for her daughter, Macy. Macy lives with Rett syndrome and Samantha, like all families with a loved one with Rett, must keep meticulous records of health documents to ensure the best possible … Read More

Taysha Gene Therapies Doses First Pediatric Patient in U.S. Gene Therapy Clinical Trial

Wednesday, January 10, 2024

Taysha Gene Therapies today announced the dosing of the first pediatric patient in their REVEAL Phase 1/2 trial of investigational gene therapy TSHA-102. For Taysha’s full press release, click here. Key Facts: The first female pediatric patient was dosed at RUSH University Medical Center in Chicago, an IRSF-designated Center of Excellence. The REVEAL Phase 1/2 … Read More

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