Recent Blogs

Find stories from other families and employees for International Rett Syndrome Foundation who are willing to share their wisdom, experiences, worry, and hope with you! Know that you are not alone in this journey and become a part of a community who is making strides towards finding a cure.

International Rett Syndrome Foundation’s New Center of Excellence Network

Tuesday, May 4, 2021

The International Rett Syndrome Foundation is committed to advancing and expanding our community’s access to best-in-class Rett syndrome care. Toward that end, we are designating 15 partner clinics across the U.S. to our Center of Excellence Network. “Establishing this network is part of IRSF’s goal to get families the expert Rett clinical care that their … Read More

COVID Update: Rett syndrome and the COVID vaccine

Monday, January 25, 2021

1.25.21 COVID UPDATE: Best practices according to our medical expert. Last month, we shared our recommendations from the Rett Medical Community regarding the Covid-19 vaccine: unless told otherwise by their personal physician, all individuals with Rett syndrome and their families, caregivers, therapists, and teachers should be vaccinated. We are awaiting approval for those younger than 16 for … 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