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What [the people that IRSF supports] are doing is moving the bar forward. You don’t know where the ‘aha’ is going to come from. But if you don’t search, you’re never going to find the answer.
We funded research that made the foundational discovery of which gene causes Rett syndrome: MECP2. This knowledge changed our understanding of Rett and provided researchers with the information they need to devise potential treatments.
We funded critical research that discovered Rett could actually be reversed. This discovery continues to inspire researchers to work on Rett in the hope of finding cures.
The first-ever placebo-controlled clinical trial for a treatment specifically for the underlying disorder of Rett syndrome was funded by IRSF. Clinical trials are a critical step in testing a treatment in the desired population (those with Rett) in order to determine if they work — and can become FDA-approved treatments.
You can’t travel efficiently from one city to another without a road, and Rett treatment research can’t advance effectively without a standardized path. Our involvement with initiatives such as the Natural History Study, the Kaminsky Scout Program, and IRSF Centers of Excellence has helped create and improve such a path.
Treatment development works faster and better when the family's needs are kept in focus. Our leadership initiatives such as Rett Research Ready and Rett Syndrome Registry have placed families front and center in the process of developing treatments for Rett.
Acadia Pharmaceuticals reported that top-line results for its Lavender Phase 3 clinical trial for trofinetide showed significant improvement over placebo.
Hive Networks today announced a multi-year partnership with the International Rett Syndrome Foundation to provide a digital health platform to support the Rett community.