Blog Archives | International Rett Syndrome Foundation

December 12, 2025

Acadia Pharmaceuticals Announces FDA Approval of DAYBUE® STIX (trofinetide) for Oral Solution, a New Powder Formulation of Trofinetide for the Treatment of Rett Syndrome

A New Frontier in Rett Research: Dr. Ronald Emeson’s Mission to Bring RNA Editing to Families

At IRSF, we are continually energized by researchers whose curiosity and compassion drive meaningful progress. One of those scientists is Dr. Ronald (Ron) Emeson, a professor at Vanderbilt University whose work explores a promising therapeutic approach known as RNA editing. His lab’s discoveries could help lay the foundation for future treatments that address the root cause of Rett syndrome.

Life After Rett: Finding Hope and Connection Beyond Loss

For parents facing the unthinkable loss of a child to Rett syndrome, a Facebook group called Life After Rett offers understanding, connection, and the reminder that no one grieves alone.

The Conversation Continues: Celebrating Five Years of The Rett Syndrome Communication Guidelines

Five years after its release, the Rett Syndrome Communication Guidelines continue to inspire a global movement in care and collaboration. What began as a set of best practices has grown into The Hive—a vibrant professional network—and has shaped graduate programs nationwide, ensuring individuals with Rett syndrome receive care that’s informed, compassionate, and connected.

More Than Rare: Understanding the Male Rett Spectrum

New research is breaking down outdated assumptions and bringing male experiences into full view.

Summer Is Here! Tips & Tools to Help

Summer may bring a shift in routine, but with the right support, it can also be a time for growth, connection, and a little more breathing room.

Taysha Gene Therapies Announces Pivotal Part B Trial Design: A Promising Step Forward for the Rett Community

Positive clinical data from part A of Taysha Gene Therapies’ Phase 1/2 REVEAL trial of TSHA-102 support plans for a pivotal study with primary endpoints based on developmental milestones from the Rett Syndrome Natural History Study.

Pioneering Progress in Rett Research: IRSF Awards Nearly $2M to Fuel Bold New Science

Dr. Nupur Garg, IRSF’s VP of Research, shares how nearly $2 million in new grants reflect IRSF's bold strategy to drive progress across the Rett research pipeline—and bring hope for meaningful change.

Aware That We’re Rare: The Power of Community in Rare Diseases

As rare disease advocates gathered for Rare Disease Week 2025, they reinforced a powerful truth: when we come together, our voices are impossible to ignore.

Raising a Hand: A Journey of Healing, Hope, and Friendship

Inconceivable. That’s the word that photographer Dave Clements uses to describe the emotion swelling in his stomach when thinking back to March 9, 2003.

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