The RLS Foundation

The Restless Legs Syndrome Foundation began in 1989 when eight people with restless legs syndrome (RLS) began sharing letters and discussing their “rare” condition. In 1992, the Foundation was incorporated as a nonprofit organization to address the growing need for research and information about this unknown condition. In the beginning, the Board of Directors would gather around the kitchen table of Executive Director Pickett Guthrie (now a member of the Board of Directors) to discuss their experiences with the disease and what courses of action would provide the most relief for persons with RLS. Their goals were simple and yet groundbreaking: increase awareness, improve treatments, and, through research, find a cure.

Today those goals have taken on a life of their own. The Foundation has grown from a simple volunteer staff to a staff of seven employees in their Rochester, Minnesota location. Our understanding of RLS has also grown. We now know that the condition is not rare at all. In fact, recent research suggests that up to 10 percent of the general population has this neurologic condition. It is perhaps the most common condition you have never heard of, affecting more people than even type 2 diabetes.

Increase Awareness

Since its inception, the Foundation has been working tirelessly to increase awareness of this disease by raising its profile and educating the public and medical communities alike. The RLS Foundation is spreading the word about RLS -- a serious, yet treatable condition with a very significant impact on quality of life. By educating healthcare providers about RLS symptoms, diagnosis, and treatment, the RLS Foundation helps patients receive the quality care they both need and deserve. In recent years the Foundation has provided information to healthcare providers at many exhibit meetings, including the American Academy of Neurology, the American College of Obstetricians and Gynecologists, and the American Academy of Nurse Practitioners.

Improve Treatments

The Foundation continually strives to be the most reputable source of information on RLS. Our renowned Medical Advisory Board, composed of leading RLS experts from all over the world, has written several publications on the diagnosis and treatment of RLS. These include our comprehensive RLS Medical Bulletin, our patient brochure, and our brochures on special topics including concerns for surgery, depression, pregnancy, and children.

Through Research, Find a Cure

The Foundation has taken giant strides to further RLS research, funding grants for 27 research projects. Among the most distinguished research projects the Foundation has put its resources behind is the ongoing Stanford Epidemiology Project (epidemiology is the branch of medicine that deals with the study of the causes, distribution, and control of disease in populations). Although it is still underway, the Foundation recognizes that the highly anticipated results of the Stanford Epidemiology Project, including the creation of a world standard questionnaire used to accurately diagnose RLS, could be spectacular. Eventually this questionnaire may help researchers understand the health consequences of RLS and identify other conditions and diseases that are associated with or exacerbated by RLS. In addition, the RLS Foundation helped fund a study led by Dr. David Rye and deCODE Genetics in Iceland which recently announced the discovery of a gene for RLS.

Join the Fight!

The Foundation has only been able to achieve these remarkable feats because of strong support from members, corporate partners, and interested persons like you. We need your help to continue the fight to fund research to find a cure, continue to improve the treatments of RLS, and continue to increase awareness. To join us in the fight for RLS, just click on the quick link on the right side of this page today!

Thank you for your support!