Blue Sky Day Rett Syndrome Scientific Symposium

On Saturday, Oct 17, Rett Syndrome Association of Massachusetts (RSAM) and Boston Children’s Hospital hosted the virtual event Rett Syndrome Scientific Symposium: Celebrating 10 Years of Blue Sky Day (recording). The event was organized and moderated by Michela Fagiolini, who gave the opening remarks. Irene Gladstone, one of the original co-founders of RSAM, began the day’s presentations by sharing her daughter’s story and their family’s journey – from seeking a diagnosis to how they have been coping during the COVID-19 pandemic.

Dr. Mriganka Sur at MIT and Dr. Zhaolan (Joe) Zhou from at UPenn gave updates on MECP2 research being conducted in their labs. Boston Children’s Hospital’s Rett Clinic Director, Dr. David Lieberman detailed current clinical research opportunities at BCH for patients with Rett syndrome.

Finally, Dr. Dominique Pichard and Monica Coenraads talked about the work being done at Rettsyndrome.org and Rett Syndrome Research Trust, two of the leading patient advocacy organizations dedicated to driving research for Rett syndrome and empowering families. Overall, the day was a compilation of researchers’ work toward creating a world with treatments for individuals with Rett syndrome. The symposium ended with a robust Q&A among researchers and participating families from the US and around the world.

By Lindsay Swanson and Michelle Coughlin

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Rett Syndrome Community Swim Class

A meeting with a family affected by Rett syndrome inspired Dr. Fagiolini to create a volunteer swim program to give individuals with Rett syndrome more freedom and mobility. In collaboration with the Rhett Syndrome Association of Massachusetts and Crimson Aquatics, community swim classes are offered seasonally.

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