Recent Blogs

Find stories from other families and employees for Rettsyndrome.org 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.

Couple with child

Connecting Families to Research

Tuesday, February 12, 2019

Connecting Families to Research From the beginning, Rettsyndrome.org (RSO) has been dedicated to accelerating research for the treatment and cure of Rett syndrome. We are equally dedicated to connecting families with information and tools to persevere through the many challenges they face while they wait for a cure. The generous support of our families and … Read More

The Role of Neurohabilitation in Achieving Maximal Outcomes in Individuals with Rett Syndrome

Saturday, June 23, 2018

Theresa Bartolotta, Ph.D., CCC-SLP and Pamela Diener, Ph.D., M.S., OT/L June, 2018 Recent advances in pharmaceutical and genetic research are providing great hope for individuals living with Rett syndrome and their families. There are several studies being conducted worldwide investigating drug therapy to improve clinical symptoms, or to correct or replace the mutated gene. As … Read More

Family Engagement Pioneers Adding to Rettsyndrome.org’s Unique Value in the Clinical Trial Process

Saturday, April 28, 2018

Family Engagement Pioneers Adding to Rettsyndrome.org’s Unique Value in the Clinical Trial Process Paige Nues, Director of Family Empowerment Rettsyndrome.org, April 2018 In a world of complexity, I aim for simplicity. My work at Rettsyndrome.org has always been to focus around the age-old basics: Why, What, Where and When. My ‘Why’ started simply: our daughter … Read More