An estimated 1 in 10 Americans has a rare disease, so almost everyone has a family member or friend with a rare disease. For me, it’s my college roommate’s sister, Dana, and her nephew, Alex, who both have Rett syndrome. Rett syndrome is a progressive neurodevelopmental disease that resembles a combination of epilepsy, cerebral palsy, autism and Parkinson’s disease. Alex’s case is even rarer because this disease is almost exclusively found in girls.
You can see their story in the video below and support the family at saferideforalex.org. October is Rett Syndrome Awareness month. This infographic explains more about the disease and the research that is currently in progress to find a cure.