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.

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

Our Family’s Experience Participating in the Natural History Study

Thursday, April 26, 2018

Samantha Brant, Family & Community Engagement Manager, Rettsyndrome.org April 26, 2018 When my daughter, Macy, was diagnosed with Rett syndrome, we entered a new and often confusing world. There was so much to learn and adjust to. I dealt with “Why Me” and “Why Her” as I struggled to understand why my daughter had to … Read More

The challenges of assessing cognitive function in children with Rett Syndrome

Wednesday, April 25, 2018

Authors: Charles A. Nelson & Lauren Baczewski Participating in standard cognitive testing can be challenging for those with Rett Syndrome (RTT) due to the disorder’s impact on language and motor skills. For example, many classic intelligence tests require individuals to select their answers using spoken words and/or by pointing. These requirements for selecting an answer … Read More