IMPORTANT NEWS - FOUNDATION NAME CHANGE

[Polar Bear]

Important news!

Starting May 1st, the Willis-Ekbom Disease Foundation is reverting to its original name: Restless Legs Syndrome (RLS) Foundation.

After adopting the term Willis-Ekbom disease in 2013, the Foundation and the board believes that the terms restless legs syndrome will better support its mission of improving the lives of people with RLS by increasing awareness, improving treatments and through research, finding a cure.

Karla Dzienkowski, the executive director of the RLS Foundation, explained why. “We have heard from countless Foundation members, healthcare providers and researchers that restless legs syndrome is their preferred term. It is descriptive and easy to use. And it is the name almost universally used in medical and scientific circles, including the daily conversations that our members have with their doctors and families. The familiarity and name recognition of restless legs syndrome will best support the Foundation’s fundraising, membership and education efforts going forward.”

As moderators, we recall that there were many strong opinions about the name change in 2013. Some of us may prefer the return, some of us may not. Either way, the decision is made and we hope that the name is much less important to us than what the Foundation can do to support and help us, its members.

http://www.rls.org/file/press-releases/ ... id=2825699

[badnights]

How sad and - I have to say it - short-sighted. The WED name was just beginning to be used in the literature. At least 5 years would have been needed for the new name to gain hold, and more like 10 years to effect a lasting change. I would have thought a commitment to see it through would have been an essential part of the Foundation's process. I am flogging a dead horse here, I suppose.

We and the Foundation should at least recognize that their name is not necessarily the disease's name. What they started does not necessarily have to stop. We can continue to call the disease WED/RLS - or RLS/WED if you prefer.