Inside the Fight to Cure Rett Syndrome – Monica Coenraads Interview
Monica Coenraads
Founder and CEO, Rett Syndrome Research Trust
About this conversation
Monica Coenraads, founder and CEO of the Rett Syndrome Research Trust (RSRT), has led the charge to cure Rett Syndrome—raising over $123 million and driving multiple gene therapy programs now in clinical trials. In this in-depth conversation, Monica shares her personal journey from her daughter Chelsea’s diagnosis to building one of the world’s most impactful rare disease research organizations. She explains the evolution of Rett research—from the discovery of MECP2 to today’s cutting-edge genetic medicines including gene therapy, base and prime editing, and RNA trans-splicing.
We discuss: • The founding of RSRT and early breakthroughs • The reversibility discovery that changed everything • The Taysha and Neurogene gene therapy trials • The future of Rett research (Roadmap to Cures 2.0) • How parents can catalyze scientific progress • The power of early diagnosis and newborn screening Stay tuned after the interview for updates on the latest Rett, STXBP1, and Phelan-McDermid Syndrome gene therapy trials. 👉 Subscribe for more interviews with scientists, researchers, and advocates advancing gene therapy for rare genetic disorders. 🌐 Visit GENErationHope.co for global updates and resources.
Key topics
- Rett research
- MECP2
- gene therapy trials
- foundation strategy
Transcript
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Download transcriptRelated explainers and articles
What Is Gene Therapy?
Gene therapy is a treatment approach that tries to address disease at the level of the gene, often by adding, replacing, silencing, or editing genetic instructions.
What Is Rett Syndrome?
Rett syndrome is a rare neurodevelopmental disorder, most often linked to MECP2, that usually appears after early development seems relatively typical.
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