Hello, Rett Families! We would like you to meet one of our board members, Tracy – a mom to three precious children. Her son has a diagnosis of Rett Syndrome. As a board, we felt it was important to learn more about boys living with Rett Syndrome. We hope you enjoy Tracy’s first blog as much as we do! WAY TO GO TRACY! “I was asked a week ago if would consider posting on the…
October is R ett S yndrome A wareness M onth and boy do we have plans. Our Quaranteam has been hard at work and we are honored and thrilled to roll out ALL FOUR events for Rett Awareness Month. This pandemic isn’t stopping RSAM from making Rett History! We need families from around the world to help make our October 24th virtual World Family Celebration come to life. For the past nine years our Blue…
As we all cope with adjusting to life in the time of COVID-19, here’s what RSAM has done in an effort to help families.
Boston Children’s Hospital is continually re-assessing the situation and providing updates.
A Parent’s Journey: Helpful Tips for Completing Guardianship For Your Disabled Child In Massachusetts
“The families don’t give up and they do believe in basic research. ” Meet Michela Fagiolini, PhD, a neuroscience researcher at Boston Children’s Hospital, who studies how brain development is altered in autism-related disorders like Rett Syndrome and CDKL5.
Thank you to all our Team Rett Runners and all those who supported the team with generous donations, cheering the team along the way and overall encouragement and support.
My daughter, Erika, is now forty years old so we have been in the Rett World for a long time. We had never heard of Rett syndrome until Erika was six years old, but neither had almost anyone else in the world!
