My Nonprofit Reviews

Shortly after I was diagnosed with ME/CFS I discovered this organization and frankly it saved my sanity. I had no idea what the illness was and neither my doctor not I knew how to treat it. The organization gave me information and support and the knowledge I was not alone . Just the stories of others and their experiences with the illness gave me confidence. It also serves as a repository for research information but does an excellent job of screening studies for quality and is careful not to
jump on the latest bandwagon.
Over the years the organization has varied its focus , at the urging of patients, from expanding public awareness of the illness to serving as a catalyst for research. Its efforts have enabled researchers to collect pilot data that could then serve as the basis of successful large scale grant requests. I am now a simple member and donor to the organization but have previously served on the Board and used my research skills to review applications for pilot study funds. I have watched as the organization created a Biobank data set of persons diagnosed with CFS and controls to enable researchers to have access to a credible pool of persons willing to participate in research. This dramatically shortens the time needed for studies and ensures quality in the population studied. In return the Association retains access to the research results. It is one of the most creative research structures I have ever seen and promises to dramatically speed up progress. I know my funds donated are well spent and can see the results in Webinars held by the researchers during the year to summarize their findings.