My Nonprofit Reviews

The RLS Foundation has worked wonders in two areas: getting WED/RLS noticed as a serious health condition by policy makers and healthcare providers, and supporting patients like me who had absolutely nowhere else to turn. Medical professionals are notoriously ignorant about the condition, and even do harm by prescribing medications that are now known to worsen the condition; but with materials from the Foundation I have been able to educate my own physicians, which has improved the quality and effectiveness of my care. Besides that kind of support, I have access to an online community of people from all over the world who share successes, solutions, and support. The Foundation also funds a considerable amount of research, which is helping to get other researchers interested in trying to figure out the mysteries of WED/RLS, all of which will hopefully lead to better treatments, and maybe even a cure. Fingers crossed.

I cannot say enough good things about the RLS Foundation. I am both a volunteer and a "client served" in your list, but I choose "client served" as the most important. My first introduction to the RLS Foundation was through its online support group (the"discussion board" at bb.rls.org), whose members and moderators I credit with saving my life. The disease we have is poorly understood by most health professionals, and the discussion board provides an arena for patients to share knowledge about the disease, how to approach doctors who need that knowledge, and how to cope.

But the discussion board is just one facet of the Foundation. I'll describe some of my favorite things below, but I can't describe all that they do. The Foundation works hard to get funding and evaluate and award grants to RLS/WED researchers. These researchers have been pushing our understanding of the disease forward every year, and it's directly due to them that better treatments have become available. They also seem to have a great relationship with the Foundation, many of them giving their own time, serving on the Medical & Scientific Advisory Board, and participating in such Foundation efforts as the remarkable webinar series (in which a researcher or clinician presents information for patients and answers questions on a specific RLS/WED-related topic), the recent extremely well-organized Patient Symposium, and creation of informative publications. I've used/attended all of these tools/events, and learned so much about the disease and how to manage it, and been given hope for the future.

The Foundation publishes a quarterly magazine for patients, and a series of brochures and pamphlets containing information about various aspects of the disease, including a special series aimed at healthcare providers, which is so important because this disease is so poorly understood among non-specialists. I frequently advise other patients to give their doctor this or that specific pamphlet; the publications are focused and well-written and professional. There's also a blog, an active facebook page, and it seems more and more ways to reach people, which is great, because different approaches appeal to different people and they're trying to reach as broad an audience as possible.

The Foundation's efforts to raise awareness of the disease have been tireless lately... awareness among the general population, within the medical profession, and in government, where policies being made can unintentionally affect RLS/WED patients in a bad way. They've created the Quality Care Center initiative, which not only helps patients find qualified help but raises awareness of the disease. I am so impressed with the energy of the people who are making the Foundation achieve its goals. It's enough to make me believe that some day I may live a normal life. I am forever grateful for all they do.