Rocky Mountain Rett Association

Rocky Mountain Rett Association Rocky Mountain Rett Association seeks a cure for Rett Syndrome.

Until a cure for this disease is found, we envision a region where girls with Rett Syndrome and their families have access to the resources, care and support they need, where the public is aware of, engaged and active in addressing this debilitating disease, and where improved treatments are found to help our girls live a little easier.

06/18/2026

Azalea loves music, Adam Levine, TJ beary tales, sweets and doing outside activities. She is very vocal and loves telling everyone what she thinks on her Tobii. 🌟💜

06/15/2026

Whitney loves Minnie Mouse! She does physical therapy, speech therapy, Occupational therapy, and ABA. Whitney is nonverbal, but she is working to learn and use an eye gaze device. 🌟💜

06/14/2026

Aria is truly a ray of sunshine. She loves her friends at school and is very loved in return! She uses her Tobii device to talk and show her personality to it's fullest! 🌟💜

RMRA Community, Please join us as we welcome Cristi to the team at the Rett Clinic. Cristi will be taking over for Trist...
06/09/2026

RMRA Community,
Please join us as we welcome Cristi to the team at the Rett Clinic. Cristi will be taking over for Tristen Dinkel as the new Rett Clinic Coordinator at Children’s Hospital CO. She has been a pediatric nurse for 18 years, and has worked at Children’s Hospital Colorado in the Neurology clinic for 13 years. Over the past 12 years, Cristi's favorite five days of the summer have been volunteering as a camp nurse at the Epilepsy Foundation of Colorado camps for kids. She has three grown kids who are all taller than her, their 5'2" mom, and she has come to terms with it. Cristi feels very honored to be a part of a team that provides loving medical care for all our Rett families. She is looking forward to meeting everyone and hearing all about their lives. That is her favorite part of being a nurse!

Hello, RMRA Community! After many years serving the Rett Clinic, Tristen Dinkel is transitioning out of her role. Below ...
06/08/2026

Hello, RMRA Community! After many years serving the Rett Clinic, Tristen Dinkel is transitioning out of her role. Below is an announcement from her:

It is with the most profound sadness that I announce I will be leaving Children's Hospital Colorado and my position as nurse coordinator for the Rett Clinic. It has been the greatest joy of my career to work in the Rett Clinic the last 13 years, your children and families have all taken a permanent residence in my heart. Last year I graduated as a nurse practitioner and will be going out in the community to care for families. Although I may be changing my roles, I will forever be a part of the community and look forward to seeing you all at future RMRA/R4R events. We have gone to great lengths to find the perfect nurse to join our team, and we are excited to introduce Cristi who will be taking over the clinic as coordinator. Please give your child a hug from me and tell them I will miss them.

We will miss you Tristen, and we are all cheering you on in your new adventures.💜

Don't miss our new blog about Minky Couture Blankets! Minky donated 200 specialty blankets to RMRA, and we were able to ...
06/06/2026

Don't miss our new blog about Minky Couture Blankets! Minky donated 200 specialty blankets to RMRA, and we were able to have a "Buy One, Give One" auction item at Mardi Gras 2026 and R4R Spring 2026. Participants could purchase a blanket for themselves, and also provide a blanket to a Rett family. We are so grateful for our partnership with Minky Couture, and the impact it has had on our Rett Community so far. Read more at the link below! 🫂💜
https://www.rmrett.org/news-from-rmra/buy-one-give-one-making-a-difference-with-minky-couture

Check out our latest blog...Tips for Rett Kids at School. 🧒📚 With incredibly valuable input from Rett moms, this blog de...
06/04/2026

Check out our latest blog...Tips for Rett Kids at School. 🧒📚 With incredibly valuable input from Rett moms, this blog details the ways you can best support your child as they transition into the school year. Thank you to everyone who helped create this blog! Click the link below to read more 💜
https://www.rmrett.org/news-from-rmra/tips-for-rett-kids-at-school

Happening Tonight! Join the International Foundation for CDKL5 Research for a virtual Sibling Panel featuring adult sibl...
05/28/2026

Happening Tonight! Join the International Foundation for CDKL5 Research for a virtual Sibling Panel featuring adult siblings who will come together to answer questions and share perspectives shaped by lived experience.

This is a great opportunity to listen and learn from adults whose experiences can help guide and support others who are experiencing similar things.

International Foundation for CDKL5 Research-IFCR

Are you interested in helping out at a Risers 4 Rett event as a volunteer, guide, or sponsor? 🤝🎣Organizing an R4R event ...
05/26/2026

Are you interested in helping out at a Risers 4 Rett event as a volunteer, guide, or sponsor?
🤝🎣
Organizing an R4R event takes a lot of support from dedicated volunteers to fishing guides, and we are always looking for support. Do you have any auction items to donate? Or would you like to become an official sponsor? Let’s chat.
Check out risers4rett.org/get-involved to learn more!
Risers4Rett

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Morrison, CO

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