International Rett Syndrome Foundation

Discover how My Rett Ally is helping families just like yours manage care and save time! Join us on April 10th for "Ally Hour," a free, interactive webinar designed to give you an inside look at everything My Rett Ally has to offer. In this exclusive event, the developers from mejo behind the app will walk you through key features, explore the unique ways families are using My Rett Ally daily, and provide tips and tricks to help you make the most of it. Plus, get an exciting sneak peek at some of the new features on the way! What to Expect: 🔍 In-Depth Feature Overview: A complete guide to My Rett Ally's tools for managing care, connecting with support, and keeping track of health. 👨👩👧 User Stories & Benefits: Hear how other families are using the app in their caregiving routines and how it’s changing their day-to-day lives. 🧭 Tips & Tricks: Pro tips for navigating the app like a pro and discovering all its features. 🗣️ Your Voice Matters: Have feedback or ideas? We’re all ears! Whether you're a long-time user or just getting started, "Ally Hour" is your chance to learn, ask questions, and connect with a community that understands the unique challenges of caring for a loved one with Rett syndrome. RSVP Today: https://lnkd.in/gWiyeCMd

We’re excited to once again welcome Acadia Pharmaceuticals Inc. as the Presenting Sponsor of the IRSF Rett Syndrome Scientific Meeting! Join us this June in Boston for a dynamic gathering of the world’s leading researchers in Rett and Rett-related fields. Don’t miss this opportunity to connect, collaborate, and drive progress in Rett research. Early bird registration ends April 8—secure your spot at a discounted rate today: https://lnkd.in/giX-mvUn.

EXTENDED! Early bird registration pricing has been extended through Tuesday, April 8th! Register now for the 2025 IRSF Rett Syndrome Scientific Meeting, bringing scientists and researchers studying Rett syndrome and related areas together from around the world! View the confirmed speakers and full agenda at https://lnkd.in/giX-mvUn.

This National Doctors’ Day, we’re celebrating the dedicated clinicians who care for our loved ones with Rett syndrome. From the neurologists who guide families through diagnosis, to the specialists providing expert care across every stage of life, your knowledge, compassion, and commitment make all the difference. To our Center of Excellence network providers and every doctor in the Rett community: THANK YOU. Your work is helping families today—and advancing the care of tomorrow.

Our first RettEd Day of the year is set for next Saturday, April 5th, at Nationwide Children's Hospital! Learn more and register by April 1st for this full day of education and connection with your local Rett community at https://lnkd.in/dkAyuH-M. Thank you to the Education Sponsors of this event for helping IRSF provide educational resources and support to families affected by Rett syndrome: Acadia Pharmaceuticals Inc., Neurogene Inc., Taysha Gene Therapies, and UCB.

Don't miss out: early bird registration for the 2025 IRSF #RettSyndrome Scientific Meeting ends this Monday, March 31st. Learn more about this year's meeting in Boston, including sessions, confirmed keynotes and speakers, and more at https://lnkd.in/giX-mvUn.

We are almost sold out! Our discounted room block at the Springhill Suites in Carlsbad Village, a beachfront, all-suite hotel centrally located to all RettAway activities, is almost at capacity. Don't wait - reserve your room now! Learn more at rettsyndrome.org/rettaway.

Last month, IRSF's Family Engagement & Advocacy Manager Katherine Busch joined nearly 1,000 advocates on Capitol Hill for #RareDiseaseWeek. While advocating for families impacted by Rett syndrome by meeting members of Congress, Katie found herself in awe of the strength of the rare disease community, which encompasses more than 30 million Americans, or 10 percent of the total population. "Each rare disease comes with its own unique set of challenges for both the individual affected and their care team,” Katie said. “But coming together like this, you really get a sense of the overlap. So many of the challenges we are facing in the Rett community are ones that other rare disease communities are facing as well.” Learn more about Katie's experience at #RareDC2025 and how you too can get involved here: rettsyndrome.org/rdw2025

The Rett Spectrum Clinic at Washington University School of Medicine in St. Louis/St. Louis Children's Hospital is one of 21 clinics across the U.S. designated by IRSF as a Center of Excellence (CoE). All clinics in the CoE Network bring together top specialists in #Rettsyndrome to provide comprehensive care and research opportunities for families affected by Rett syndrome. To learn more about this clinic, the CoE designation, or to find a clinic near you, visit https://lnkd.in/ghTVBPgf.

"I was a graduate student studying neuroscience when I first met a girl with Rett syndrome more than 20 years ago. Since then, I have been driven to try and unravel the remarkable complexity of this neurological disorder in which numerous genes and cellular pathways across different cell types and developmental stages are dysregulated due to mutations in MeCP2. With the essential funding provided by an Innovation Award from the International Rett Syndrome Foundation, my lab is investigating novel therapeutic approaches to improve the ability of the brain to learn and adapt.” - Jessica MacDonald, PhD at Syracuse University and 2024 grant recipient IRSF’s highly comprehensive scientific program in #Rettsyndrome includes the advancement of genetic approaches and developing drugs that improve quality of life, as well as the development of a clinical research network that brings treatments to families. Visit our website (https://lnkd.in/gMHwWmDm) to learn more about our impact, our most recent round of nearly $2M in research awards, and how you can help us make research a reality."