Introducing IRSF's newest learning platform

Rett Forward offers a clear, accessible path for families seeking to better understand the process of clinical trials. Designed with input directly from the Rett community, the three thoughtfully designed modules in this self-paced educational course break down key topics like trial design, participant experience, and emerging treatments—including cutting-edge approaches like gene therapy. Rett Forward bridges the gap between complex science and everyday decision-making, helping families feel prepared for conversations about research and care.  

Discover the Value of Rett Forward 

The clinical research journey can feel overwhelming—but Rett Forward was designed to make it clear, approachable, and empowering for families. Here’s what makes it a valuable resource: 

Learn from the Experts

Hear directly from world-renowned Rett researchers and clinicians. 

High-Quality, Engaging Lessons

Enjoy concise, easy-to-follow videos designed for busy families.

Up-to-Date Information

Access the latest on emerging therapies, clinical trials, and more. 

Make Informed Decisions

Learn what to ask, what to consider, and how to move forward.

What’s covered in the course?

Rett Forward is built to simplify complex topics and provide you with a clear understanding of how clinical trials work—what they involve, how they’re developed, and what to expect if you choose to participate. Across three focused modules, the course walks through the science behind Rett syndrome, potential treatments like gene therapy, trial design, and real-world considerations—giving you the knowledge to explore clinical research on your own terms. 

Gene Therapy: Foundations, Design, and Administration

Explore the science behind genetic treatments and how they are being developed to treat Rett syndrome. This module covers everything from DNA and RNA basics to delivery methods, dosing, immune response, and long-term impact.

The Clinical Trial Process: From Research to Approval

Follow the full path of a clinical trial—from preclinical research to FDA approval. This module explains how trials are designed, who can participate, what risks are involved, and how new treatments move from experimental to approved. 

COMING SOON!

Participation Considerations and Looking to the Future

Look beyond the basics to understand what participation really means and where Rett research is headed next. This module covers real-world factors like time, travel, and expectations—plus a look at future therapy options and how your involvement can help drive progress. 

COMING SOON!

Our Expert Collaborators

Meet the clinicians, researchers, and thought leaders who helped shape Rett Forward—trusted voices in the Rett community who bring deep expertise and real-world insight to every lesson. 

Dallas Armstrong, MD
UT Southwestern
Children’s Health Dallas
Tim Benke, MD, PhD
University of Colorado
Children’s Hospital Colorado
Kathie M. Bishop, PhD
Rare Diseases Consultant 
Jeffrey Chamberlain, PhD
University of Washington 
Ronald Emeson, PhD
Vanderbilt University 
Kyle Fink, PhD
University of California, Davis 
Nupur Garg, PhD
VP of Research, IRSF
Rocco Gogliotti, PhD
Loyola University Chicago 
Wendy Gold, PhD
The University of Sydney
Joe Horrigan, MD
Physician & IRSF Board Member
Jeannie Lee, MD, PhD
Harvard Medical School
Massachusetts General Hospital 
Eric Marsh, MD, PhD
Children’s Hospital of Philadelphia 
Paige Nues
Family Empowerment Director, IRSF
Alan Percy, MD
University of Alabama at Birmingham 
Robin Ryther, MD, PhD
Washington University in St. Louis 
Bernhard Suter, MD
Baylor College of Medicine 

Our Sponsors

This programming was made possible through the generous support of the following: 

Neurogene logo

Questions about Rett Forward? We want to hear from you!

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