International Rett Syndrome Foundation

Traveling for ASCEND? We’ve got you covered.

Our new ASCEND 2026 Family Travel & Activity Guide is now available, featuring recommendations from local Rett families and parents experienced with traveling alongside a loved one with Rett syndrome.

Inside, you’ll find tips and ideas to help your family plan your trip, explore the area, and make the most of your time in Minnesota.

Download the guide today and start planning your ASCEND experience:https://www.rettsyndrome.org/wp-content/uploads/2026/04/ASCEND-2026-Family-Travel-and-Activity-Guide-1.pdf

Growing our impact means growing the ways we support the Rett syndrome community.💜

As we prepare for ASCEND, we’re launching a new weekly series to help you get to know the people behind our work. Throughout the series, we’ll highlight the staff, board members, and community leaders helping expand support, strengthen connections, and move our dual mission forward.

We're starting with the newest members of our team: the Newly Diagnosed Mentors. These mentors help families feel seen, supported, and connected during one of the most overwhelming points in the journey. Parents to individuals with Rett themselves, these mentors bring lived experience, empathy, and a deep understanding of what it means to navigate the early days after diagnosis.

We’re proud to offer families more personal, meaningful support from the very beginning of the journey. If you're newly diagnosed, connect with our mentors by registering with us here: https://www.rettsyndrome.org/families/newly-diagnosed/

Follow along each week to connect and get to know more of the people behind the mission.💜

Calling all runners, walkers, families, and friends in Chicagoland - join us for the 27th Annual Run For Rett on Saturday, May 2 in Elk Grove, IL (just outside Chicago)! 🌳✨

Whether you’re local or looking for a fun weekend getaway, here’s your chance to support life‑changing research for Rett syndrome. There will be a 5K Run/Walk and a 1‑Mile Fun Run/Walk for all ages. Beginners, seasoned runners, and everyone in between are welcome! 🙌 First 200 participants get an official Run For Rett t-shirt.

Can't make it and still want to show your support? The run has a virtual option, too! Check out the link for more details. Hope to see you there!

REGISTER: https://raceroster.com/events/2026/112731/run-for-rett-2026

Registration is now open for the first session of Rett in Focus, a new IRSF webinar series designed to give the Rett syndrome community a closer look at specific treatments, clinical trials, and therapeutic developments.

Join us on Tuesday, April 28, at 6 p.m. ET for an overview of DAYBUE® STIX (trofinetide), moderated by Dr. Dominique Pichard, Chief Scientific & Medical Officer at IRSF. This session will explore how DAYBUE was studied, what clinical trial results showed, possible side effects, and how DAYBUE STIX may offer added flexibility within the treatment experience. DAYBUE or DAYBUE STIX are prescription medicines used to treat Rett syndrome in adults and children 2 years of age and older.

To learn more and register: https://us02web.zoom.us/webinar/register/WN_fVvRD4ojTUmF5--BbJyVMA

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Please read the full Prescribing Information: https://daybue.com/daybue-pi.pdf, including Patient Information:https://daybue.com/daybue-patient-info.pdf

Presented in partnership with Acadia Pharmaceuticals