Rett Gazette
IRSF’s fall publication features updates and news from the Rett syndrome community, including advancements in research, real-world experiences with treatments, personal stories from the community, and more.
Latest Release
Coming Soon
2025 Rett Gazette
This year’s Rett Gazette spotlights a turning point. The 2025 edition explores how decades of family-powered data—first through the Natural History Study and now the Rett Syndrome Registry—are reshaping clinical trials and accelerating progress toward new treatments. Inside, you’ll find major updates on gene therapy and the expanding therapeutic pipeline, powerful family stories from events like the RettAway, and an in-depth look at the experiences of males with Rett. It’s been a year of movement, momentum, and measurable impact—and it’s all driven by you.
The Rett Gazette is offered free to the Rett syndrome community and should be arriving in your mailbox later this month. Scroll down to learn more.
This year’s Rett Gazette spotlights a turning point. The 2025 edition explores how decades of family-powered data—first through the Natural History Study and now the Rett Syndrome Registry—are reshaping clinical trials and accelerating progress toward new treatments. Inside, you’ll find major updates on gene therapy and the expanding therapeutic pipeline, powerful family stories from events like the RettAway, and an in-depth look at the experiences of males with Rett. It’s been a year of movement, momentum, and measurable impact—and it’s all driven by you.
The Rett Gazette is offered free to the Rett syndrome community. Scroll down to find links to resources highlighted in this issue or use the buttons below to download the digital version or request a printed version be mailed to you (U.S. addresses only).
Go Deeper Into This Issue
Choose a section:
Research
- Pg. 2: ASCEND 2026 Rett Syndrome National Summit
- Pg. 3: Rett Syndrome Natural History Study (NHS) Database, stewarded by IRSF
- Pg. 4: Join the Rett Syndrome Registry
- Pg. 6: Clinical Trials and Rett Therapeutic Pipeline
- Pg. 8: Watch the 2025 highlights and learn more about the annual IRSF Rett Syndrome Scientific Meeting
- Pg. 10: Watch the RettEd Webinar: New Research, New Hope: The Male Rett Spectrum
- Pg. 11: Rett Forward: A Clinical Trial Master Class
Families
- Pg. 12: Share your Story
- Pg. 14: Watch: Laura Hameed on Accelerating Rett Syndrome Progress
- Pg. 15: IRSF RettAway
Advocacy
Get Involved
- Pg. 20: Fundraising for Rett:
- Pg. 22: Contact us about Legacy Gifts
- Pg. 23: 2025 Impact Report (Coming Soon)
- Pg. 24: Donate today
A Special Thank You
We would like to thank the following individuals for contributing to the production of this year’s issue:
Staci Almager
Tim Babcock
Alicia Barber Minteer
Tim Benke
Kevin Black
David Clements
Meghan Cordeiro
Joi Cotton
David Creelman
Christopher DeSanty
Catherine Earle
Judian Evans
Harrison Gabel
Molly Gearin
Natalie Gifford
Laura Hameed
Kristine Hess
Eric Landaverry
Kelly Naranja
Julie Nguyen
Paige Nues
Joyce Opinsky
Badegül Özdemir
Dominique Pichard
Anita Poulton
Savannah Rutledge
Shannon Schiebel
Coriann Stinson
Mallorie Stump
Talia Thompson
Rebecca Visser
Bailey Wale
The IRSF Team
Fuel What's Next
Every story in the Rett Gazette is a story of progress made possible by this community. Your gift helps accelerate research, support families, and turn today’s momentum into tomorrow’s breakthroughs.
Rett Gazette Mailing Request
We’d love to send you a physical copy of our latest Rett Gazette (U.S. addresses only). Please fill out the form below!
**Please Note: Mail delivery times vary. If you have not received your copy of the 2025 edition by October 15th, please use this form to request a copy be mailed to you. The digital version will also be available soon!
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