Katie Nues Foundation

04/21/2026

Registration is 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?fbclid=IwY2xjawRU525leHRuA2FlbQIxMABicmlkETFTOWpRRkdEajJoM09WZEdXc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHq0WU440RY38e0Jax2VCBeCzwsLmXOz1-Vn7XsjfK2PyA3HBnpIQvKXlmq-z_aem_cMyajscMQO92NSDBWz5o-A #/registration

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

04/15/2026

Get registered! See you there!

04/13/2026

Please share with your child’s providers! Continuing education around Rett syndrome!

IRSF provides a one-stop location where providers can find a wealth of CME credit opportunities to learn about Rett syndrome. Find all your Rett CME resources here.

04/07/2026

Don’t miss this fun and informative event! 🏕️🐴🔥🏊‍♀️

03/24/2026

From IRSF:
Registration is now open for IRSF’s RettEd Day with Phoenix Children's in Phoenix, AZ.

This marks the first RettEd Day designed to reach families beyond our network of Centers of Excellence—bringing education, resources, and connection to areas without a nearby specialized Rett clinic. It’s an important step in expanding how we serve the Rett community.

Join us for a full day of programming from 9:30 a.m. to 3:30 p.m., followed by a parent panel and social hour reception. Registration is just $10 and includes all programming and lunch.

RettEd Days are designed for adult caregivers of individuals with Rett syndrome.

Learn more and register: https://www.rettsyndrome.org/retted-pc26

With thanks to our 2026 presenting sponsor Acadia Pharmaceuticals and supporting sponsors Neurogene Inc. and Taysha Gene Therapies.

03/03/2026

From IRSF:
Rett research is advancing in meaningful and measurable ways — from expanding treatment pipelines to gene therapy programs entering pivotal stages. In one week, IRSF’s scientific leadership team will provide a comprehensive update on where that progress stands and what is driving it forward.

Join Chief Scientific & Medical Officer Dr. Dominique Pichard and the IRSF scientific team for Rett Research in Motion: IRSF’s 2026 State of Research. This one-hour briefing will outline the current research landscape, the treatment pipeline, and how our collective efforts — through participation, advocacy, and investment — continue to accelerate advancement.

If you have questions about the science, the pipeline, or what comes next, we encourage you to submit them when you register.

Next Tuesday, March 10
1 p.m. ET

Register and submit your questions: https://us02web.zoom.us/webinar/register/WN_7q3Ytxi4SHSFi667dmhS4A

02/18/2026

From IRSF:
Rett research is advancing in meaningful and measurable ways — from expanding treatment pipelines to gene therapy programs entering pivotal stages. This momentum is not accidental. It is the result of sustained scientific focus, strategic investment, and a community that continues to show up.

Join IRSF’s scientific team, led by Chief Scientific & Medical Officer Dr. Dominique Pichard, for an engaging one-hour live webinar outlining the current research landscape, the state of the treatment pipeline, and how our collective efforts — through participation, advocacy, and investment — are accelerating progress.

Rett Research in Motion: IRSF's 2026 State of Research
Live Webinar
Tuesday, March 10
1-2 p.m. ET

Register now and submit your questions: https://us02web.zoom.us/webinar/register/WN_7q3Ytxi4SHSFi667dmhS4A

02/17/2026

From IRSF:
Caregivers, share your story!💜

Researchers at the University of Denver are seeking participants in their Caregiver Speaks 6-week storytelling program. The program is open to family caregivers of individuals with Rett syndrome & related disorders (FOXG1, MECP2 Duplication, CDKL5).

Share your experiences once a week in a private Facebook group, connect with other caregivers, and help improve a new caregiving program - all while earning $100 for your time.

If you’re 18+ and care for a child or adult with Rett, your story can make a real difference! 💬✨

To join or ask questions about the program, please contact Principal Investigator Talia Thompson, PhD, at [email protected].

02/12/2026

From IRSF:
Researchers at Queen’s University Belfast are seeking parents and family caregivers to take part in a short research survey focused on the quality of life and lived experiences of those caring for individuals with Rett syndrome and related rare conditions.

🗓️ The survey is open through March 5.

If you are a parent or caregiver (18+) of someone with Rett syndrome, your voice is essential.💜This confidential survey aims to better understand the challenges families face, helping inform stronger support in the future.

👉 The survey can be found here:
https://cphqub.qualtrics.com/jfe/form/SV_3dBVHDFL1DkgjzM

Thank you for helping this research reach and support more families — and for sharing with others who may want to participate.

Any questions for this study should be directed to [email protected].

02/11/2026

Rare Disease Week begins February 23 — and we’re getting ready!

This important week shines a spotlight on the entire rare disease community and the urgent need for awareness, research, and support. Help us amplify awareness of Rett syndrome and the community it impacts by doing one (or more!) of these three things:

💜 Wear Your Support
Help spark conversations everywhere you go. Grab an “I 💜 Someone with Rett” shirt or sticker—or check out our brand-new “Rett is Rare. HOPE Doesn’t Have to Be” merch, exclusively for RDW26.

💜 Request Your Angel Awareness Card
Do you have a child with Rett? Submit their name, photo, and a fun fact about them to receive a digital Angel Card—perfect for sharing and educating your community about Rett syndrome.

💜 Start an Online Fundraiser
No gift is too small. Start an online fundraiser for IRSF and help drive awareness, support, and research for families living with Rett syndrome. We’ll be with you every step of the way.

Learn more and get started at https://www.rettsyndrome.org/get-involved/raise-awareness/. Thank you for helping us shine a light on Rett syndrome and those impacted by it. 💜