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.

Pioneers Add to RSO’s Value in Clinical Trial Process

Monday, April 23, 2018

Paige Nues, Director of Family Empowerment Rettsyndrome.org 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 Katie was diagnosed with Rett syndrome and I couldn’t sit by and wait for someone … Read More

Implications of Clinical Trials: A View of the Panorama

Tuesday, March 20, 2018

Alan Percy, MD and Walter Kaufmann, MD. The advances in basic and clinical research over the past two decades since the identification of mutations in the gene for most individuals with Rett syndrome (RTT) has been astonishing. Within the past few years, we have seen the number of clinical trials involving potential disease-modifying pharmaceutical agents … Read More

Our Research Delivers

Wednesday, March 14, 2018

Having recently joined Rettsyndrome.org, I am humbled and grateful for the opportunity to serve this very special community. My 30 years as a health care administrator has taught me that medical solutions to even the simplest condition can be complicated and challenging. For example, there are about 75 drugs to treat something as “simple” as … Read More