About the Foundation
Willis-Ekbom Disease Foundation, formerly the RLS Foundation

November 2014 Board Of Directors Meeting, Boston

Pictured left to right: Zibby Crawford (staff), Linda Secretan, Lew Phillips, Jacci Bainbridge, Bob Waterman,
Michael Zigmond, 
Regis Langelier, Faith Duncan (staff), Michael Brownstein, Karla Dzienkowski (ED)

On February 4, 2013, the Restless Legs Syndrome Foundation filed an assumed name registration to do business as the Willis-Ekbom Disease (WED) Foundation. The Foundation began in 1989 when eight people with Willis-Ekbom disease (WED), formerly known as restless legs syndrome or 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 former 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 WED/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 three employees in their Austin, Texas location. Our understanding of WED/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 WED Foundation is spreading the word about WED/RLS -- a serious, yet treatable condition with a very significant impact on quality of life. By educating healthcare providers about WED/RLS symptoms, diagnosis, and treatment, the WED Foundation helps patients receive the quality care they both need and deserve. 

Improve Treatments

The Foundation continually strives to be the most reputable source of information on WED/RLS. Our renowned Medical Advisory Board, composed of leading WED/RLS experts from all over the world, has written several publications on the diagnosis and treatment of WED/RLS. These include our comprehensive WED/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 WED/RLS research, funding grants for 40 research projects.

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 WED/RLS, and continue to increase awareness. To join us in the fight for WED/RLS, just click on the button below!

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Thank you for your support!

About Willis-Ekbom disease

If you have Willis-Ekbom disease (WED), formerly known as restless legs syndrome (RLS), you are not alone. Up to 10% of the U.S. population may have WED/RLS. Many people have a mild form of the disorder, but WED/RLS severely affects the lives of millions of individuals. Spend some time our website to discover how the WED Foundation can help you in your own personal WED/RLS journey.

Questions for the Foundation? Please call us at (507) 287-6465 or email us at info@willis-ekbom.org.