Rocky Mountain Rett Association

04/06/2026

Tight Lines for Tillie: A Fundraiser Supporting the Rocky Mountain Rett Association 💜

Join the Tinsley family as they fundraise for the Rett Clinic at Children's Hospital Colorado. Tillie has a powerful story, and is now a 2nd grader with physical therapy, occupational therapy, speech therapy, and more hospital visits in her short life than any child should have to log. She handles all of it with a grace that humbles her family.

Visit https://www.coloradogives.org/story/lkd3eg to read more of Tillie's story and donate. It takes a village! 🌟💜

Risers4Rett

04/04/2026

Ascend 2026, the Rett Syndrome National Summit, is scheduled for June 30-July 3 in Prior Lake, MN. This event is an excellent opportunity to connect with other Rett families, clinicians, and researchers. Visit https://www.rettsyndrome.org/families/rett-education/ascend-national-summit/ to learn more.

04/03/2026

https://www.youtube.com/watch?v=GsUf3sRrrbA

Two teens living with and their moms sit down to play with puppies and share what adventure, joy, and possibility really look like. 🐾💜 Curiou...

04/03/2026

https://rettsyndromenews.com/news/fenfluramine-reduces-hard-treat-seizures-rett-syndrome/?mc_euid=f18992db2f&utm_source=RETT&utm_campaign=efe146cc7a-Email_ENL_US_RETT&utm_medium=email&utm_term=0_ca8f619b8e-efe146cc7a-75127345

Fenfluramine, an add-on medication approved for certain types of epilepsy, helped reduce seizures in three girls with Rett syndrome.

04/01/2026

Our 8th Annual Mardi Gras Fete was a great success!
Thank you to everyone for your generous support - We are deeply grateful to our sponsors, donors, volunteers, speakers, performers, and every guest who showed up with heart and generosity. It takes a village! 💜💛💚
Visit https://www.rmrett.org/news-from-rmra/mardi-gras-fete-2026 to check out our Mardi Gras blog. 🌟

03/27/2026

The countdown is on - just four weeks to go! R4R's Spring 2026 event is nearly at capacity, and we don't want you want to miss this one. If you're planning to join us, now's the perfect time to secure your spot!

Visit https://www.risers4rett.org/events/spring-2026-tournament to learn more.

Risers4Rett

03/24/2026

The Rett Clinic at Children's Hospital Colorado offers support for a variety of different diagnoses - including Rett Syndrome, CDKL5, and FOXG1 Syndrome.

03/22/2026

In 2025, the Rett Clinic at Children's Hospital Colorado welcomed an all-time high of new patient and follow-up appointments. It is because of your donations and generosity that it has been possible to for the clinic to be able to offer more clinic days! We are so grateful for your support - it truly takes a village.💜

03/19/2026

Honoring Tristen at Mardi Gras! Thank you for your incredible dedication to the Rett Clinic! You will be missed 💜

03/17/2026

Jaden was such a great addition to our Mardi Gras party! Everyone loved the coin toss - what a great way to get people up and moving for a great cause. We are so grateful for our partnership with 9News!

9 News Jaden Knowles Drew Carney

03/15/2026

We absolutely loved having Drew Carney as our emcee for our 8th Annual Mardi Gras Fête! He did a fabulous job and truly brought so much energy to the event! 🎤💃

9 News Drew Carney

03/14/2026

Visit our website to read our newest blog, an overview of Medical Biases and Misconceptions Impact Diagnoses in Males With Loss of Function MECP2 Variants, a research paper by Talia Thompson and many other professionals.

The paper found that Rett Syndrome does affect males, but lasting biases contribute to late diagnoses or misdiagnoses in males with Rett Syndrome.

Visit https://www.rmrett.org/news-from-rmra/rett-in-males-a-research-study to read more.