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COVID Update: Advice regarding Thanksgiving (and the coming holidays)

Friday, November 20, 2020

By Dr. Tim Benke, Rettsyndrome.org Medical Advisor The CDC has just posted regarding Thanksgiving and Covid: https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/holidays/thanksgiving.html They suggest that the safest way to celebrate Thanksgiving (and the coming holidays) is to celebrate at home with the people you live with.  This seems to be very prudent so that we can all celebrate many more … Read More

Kelsey & Toyua: Friendship & Hope Just 20 Minutes Away

Wednesday, November 18, 2020

Kelsey Clark felt alone and isolated when her five-year-old daughter Charlee was diagnosed with Rett syndrome in April 2019. Kelsey, her partner Jordan, Charlee, and their two-year-old son Bennett live just over an hour from New Orleans in the small town of Amite—population 4,200—and had never even heard of the disease before. Kelsey’s grandmother, a … Read More

Setting the Standard in Best-in-Class Care and Rett Syndrome Centers of Excellence

Thursday, September 17, 2020

RSO Establishes Medical Advisory Board to Enhance Clinical Care and Research Availability Creating a world without Rett syndrome requires a national network of clinics that are working closely together, sharing best practices, ensuring excellent care, and standing ready to participate in clinical trials. To make this network a reality, Rettsyndrome.org has partnered with 11 esteemed clinical … Read More

Serving & Equipping Families with Rett

Wednesday, July 29, 2020

By Samantha Brant, Family & Community Engagement Manager, Mom to Macy When most families find out their child has Rett syndrome, it’s the first time they’ve ever heard of the disease. Often they’re overwhelmed with emotions and fear and questions as they try to figure out what to do next, and many families search the … Read More

Gene Modifying Therapy

Gene Modifying Therapy Research: Accelerating Toward a Cure

Wednesday, July 22, 2020

By Dominique Pichard, MD, Chief Science Officer, Rettsyndrome.org We wanted to explain this incredibly complicated work and at the same time let you know that we’ve got you covered. We are working hard to provide a better life for your loved ones with Rett syndrome. It is believed that the greatest life improvements will come … Read More