International Rett Syndrome Foundation

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International Rett Syndrome Foundation

IRSF's vision is to create a world without Rett syndrome. We fight for families living with Rett syndrome and a world without it. Learn more at rettsyndrome.org.

Guided by families & experts worldwide, we fund trailblazing research seeking treatments and a cure, empowering support that helps families cope and offers hope, and increasing awareness of Rett. As the leading Rett syndrome research and advocacy organization, the International Rett Syndrome Foundation builds upon our 40-year commitment to breakthrough discoveries and life-changing advancements in

research toward treatments and a cure while supporting families affected by Rett syndrome. Through our legacy foundation pioneers, we have invested over $60M in research leading to identifying Rett syndrome’s cause, demonstrating Rett syndrome is reversible in mice, and supporting the clinical trials that led to the first-ever FDA-approved treatment.

04/30/2026

Thinking about traveling with your loved one with Rett syndrome, but not sure where to start?

You’re not alone. Whether you’re planning to attend ASCEND 2026, preparing for a family vacation, or considering your first trip away from home, thoughtful planning can help make travel feel more manageable.

Join us for Rett on the Road: Making Travel Possible & Memorable, a live RettEd Webinar featuring Susan Lee and Erin Smith Qu. They’ll share practical guidance on packing, planning for accessibility needs, navigating airports and transportation, choosing accommodations, maintaining routines, and adapting when plans change.

Register now and submit your questions:
https://us02web.zoom.us/webinar/register/WN_f7SMANQRQGWo4wbyGSt1HA

04/29/2026

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

04/28/2026

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.💜

04/27/2026

Don't miss our 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 tomorrow 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

_____

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

04/24/2026

"Attending IRSF's ASCEND 2024 Summit in Denver as a father meant stepping into a space where the isolation of a rare disease diagnosis was replaced by a powerful sense of companionship and shared purpose.

In the shadows of the Rocky Mountains, the summit offered more than just clinical updates; it provided a renewed hope that continues to bolster my determination to fight for my child's future. Whether it was hearing from medical experts from the IRSF Centers of Excellence or connecting with other "Rett dads" who truly understand the courage and advocacy required daily, the experience was igniting.

For myself, the visible progress in MECP2 research and therapeutic pipelines served as a vital reminder that my hopes and dreams for my child are still very much alive and that the community is "rising together" to turn those dreams into reality."

- Matt Dahms, Rett dad

Early bird registration for ASCEND ends tonight! Learn more about ASCEND 2026 at https://www.rettsyndrome.org/families/rett-education/ascend-national-summit/.

💜

04/23/2026

We love to see the Rett syndrome community coming together in meaningful ways across the country to raise awareness and support. Here are a couple of May highlights:

📍 May 2: Chicago, IL — Run for Rett. Join this annual run, now in its 27th year, to support life-changing research for Rett syndrome.

📍 May 2: Corinna, ME — Enchanted Dreams Fantasy Gala. Enjoy an unforgettable evening of food, fun, and fireworks while supporting an incredible cause.

📍 May 11: Jeffersonville, PA — Mark Charamella Memorial Golf Outing. Participate in an 18-hole scramble-format golf tournament to help create a world without Rett.

From brand-new events to long-standing favorites, it’s inspiring to see so many communities showing up for Rett families.

Find an event near you (or create one of your own!) by visiting: https://www.rettsyndrome.org/get-involved/events-calendar/

04/21/2026

It's not too late to register for our RettEd Day with Phoenix Children's! The event will feature a full day of programming and speakers geared towards adult caregivers, followed by a social hour reception. To learn more and to register for the event, please visit: https://www.rettsyndrome.org/families/rett-education/retted-pc26/. Registration will close on April 25th.

IRSF's 2026 RettEd Days are proudly presented by Acadia Pharmaceuticals with support from Neurogene Inc., Taysha Gene Therapies, and UCB Biopharma.

04/20/2026

Thank you to Acadia Pharmaceuticals, the presenting sponsor of our ASCEND 2026 Rett Syndrome National Summit!

They'll be joining us onsite in Prior Lake, Minnesota, in our dedicated exhibitor hall - and we hope you will too! Discounted early-bird registration pricing has been extended through this Friday, and sponsorship and exhibitor opportunities are now available for both ASCEND and the Scientific Meeting.

Check out all of the opportunities to join hundreds of Rett families, clinicians, researchers, and more this summer at https://www.rettsyndrome.org/families/rett-education/ascend-national-summit/.

04/17/2026

More time to save on ASCEND 2026 💜 Early bird pricing is now extended through Friday, 4/24!

For families, parents, and caregivers, ASCEND is a chance to come together for meaningful connection, practical learning, and time with a community that gets it. If ASCEND has been on your mind, this is your chance to register at the discounted rate.

Lock in early bird pricing by 11:59 p.m. PT on 4/24:
🔗https://www.rettsyndrome.org/families/rett-education/ascend-national-summit/

Have questions about this year's ASCEND Summit? Ask them below or send us an email at [email protected]!

04/15/2026

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

04/14/2026

Connection you can feel. Joy you can share.💜

This is what ASCEND is all about: families coming together, making memories, and experiencing the joy of being surrounded by people who understand the Rett journey. From meaningful moments to pure fun, ASCEND creates space for connection, celebration, and the kind of community you can feel.

Early bird pricing for this summer’s ASCEND 2026 in Minnesota ends on Friday! Register now to lock in the discounted family rate for the full conference, and plan to bring the whole family with our social events ticket, which includes three nights of evening fun, including the Purple Party.

Don’t miss your chance to be there. Register NOW: https://www.rettsyndrome.org/families/rett-education/ascend-national-summit/

04/13/2026

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

_____

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

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Cincinnati, OH

Telephone

+18008187388

Website

https://www.rettsyndrome.org/

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