Category

Family Empowerment

My Rett Ally: Revolutionizing Care Management for Rett Families

Thursday, January 11, 2024

On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list for her daughter, Macy. Macy lives with Rett syndrome and Samantha, like all families with a loved one with Rett, must keep meticulous records of health documents to ensure the best possible … Read More

Introducing My Rett Ally: A New Tool to Support Caregivers

Tuesday, July 18, 2023

My Rett Ally, a web application powered by mejo, is specifically designed for Rett syndrome patients and families to simplify and enhance care coordination. The International Rett Syndrome Foundation (IRSF) is pleased to announce the launch of the My Rett Ally web app, a valuable addition to the resource toolkit for parents and caregivers of … Read More

Acadia Pharmaceuticals Acquires International Rights to Trofinetide

Thursday, July 13, 2023

BIG NEWS for our international Rett syndrome community! Today, Acadia Pharmaceuticals announced they have acquired the rights to make trofinetide available for the treatment of Rett syndrome across the globe. READ THE PRESS RELEASE This is an essential starting point in ensuring ALL Rett families have access to this treatment. Acadia already retains the rights … Read More

RettAway Reflections

Tuesday, July 11, 2023

By Samantha Brant, Family & Community Engagement Manager, and mom to Macy As I returned home from this year’s RettAway at Morgan’s Inspiration Island, my heart swelled with not only pride but warmth. I attended the last RettAway in 2017 as simply a parent to a 3-year-old little peanut, Macy. And I took so much … Read More

IRSF Welcomes Three New Members to its Board of Directors

Monday, July 10, 2023

The International Rett Syndrome Foundation (IRSF), a mission-driven advocacy foundation focused on funding research and supporting families impacted by Rett syndrome, today announced the expansion of its Board of Directors. Mary Engel, Laura Stoppel, and Steve Wood have been appointed to the IRSF Board, effective July 1, 2023. “We are delighted to welcome these new … Read More