International Rett Syndrome Foundation

"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/.

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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/

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.

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/.