ROCKY MOUNTAIN RETT ASSOCIATION

Description

In 2005, a group of Colorado family and friends of girls with Rett Syndrome (RS) came together to find local solutions to their complex needs that national Rett organizations could not adequately address. The group worked on vetting local providers and identifying local educators, doctors, and other first line of care providers who understood RS and the therapies and equipments appropriate to it. They built a supportive community of people who understood their challenges and could share experiences, resources, and support. The community also agreed that they needed data on local girls with RS so that they could advocate for their interests in research and drug trials, and they wanted to ensure fundraising efforts were addressing local needs. In 2009, the Rocky Mountain Rett Association (RMRA) incorporated as a Colorado 501(c)3 organization as the only organization addressing the particular needs of girls and families with RS in the Rocky Mountain region.

Rett Syndrome is a debilitating neurological disorder diagnosed almost exclusively in females. RS is a regressive disease, robbing children who have developed normally until 6-18 months of speech and motor skills. RS leaves its victims profoundly disabled and completely dependent on others for every basic need. There are no cures for the disease and it is not population-specific.

Remarkable efforts in both organization and private fundraising allowed RMRA to lead the way for a Rett Syndrome Clinic at Children's Hospital, Colorado, which opened in the fall of 2011.