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Nonprofit Overview

Causes: Health, Specifically Named Diseases, Specifically Named Diseases Research

Mission: Restless legs syndrome (RLS), also known as Willis-Ekbom disease (WED), is a chronic neurological disease that affects approximately 7% of the world's population. The goals of the RLS Foundation are: 1) to increase awareness; 2) to improve treatments; 3) through research, to find a cure.

Results: RLS Foundation has funded over $1.5 million in research grants to find a cure for RLS.

Target demographics: men, women and children struggling with restless legs syndrome

Direct beneficiaries per year: over 4000 Foundation members

Geographic areas served: U.S. & Canada

Programs: educational webinars and literature to educate and increase awareness, fund research to find a cure for restless legs syndrome

Community Stories

46 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

As an academic Neurologist and Sleep Specialist at Vanderbilt University Medical Center, Nashville, Tennessee, I have found the RLS Foundation to be an invaluable resource and aid for my patients suffering from Restless Legs Syndrome. In addition to helping individuals who suffer from this condition with emotional and informational support, they have helped us carry out our local Nashville support group meetings for RLS patients and their families. The RLS Foundation newsletter is an important source of information for patients and physicians with its emphasis on proper diagnosis and treatment and the latest research on RLS and its allied condition, Periodic Limb Movements in Sleep (PLMS). The Foundation also is responsible for getting well placed articles on RLS into the broader media, further educating the public about this oftentimes serious condition which through insomnia can impair the quality of life. A small research grants program funded by the Foundation stimulates investigation into new possible causes and treatments. Art Walters, M.D. Professor of Neurology, Sleep Division, Vanderbilt University Medical Center, Nashville, TN.

Professional with expertise in this field

Rating: 5

The RLS Foundation in the last few years under the new leadership of Foundation board chair (Phelps) and Foundation director (Dzienkowski) has pulled the Foundation out of a major nose dive. It has work very hard to prove itself worthy of the patients, which it purports to serve by focusing on advancing awareness of disease, by educational efforts both in the clinical and scientific community, and by supporting research for new treatment options.

Board Member

Rating: 5

The Restless Legs Syndrome Foundation is THE reliable source of information about this horrible disease - and much more. In the past year, the RLS Foundation has tripled its commitment to funding research that will help to improve treatments and find a cure. It is advocating to protect patients' right to obtain medications that are known to be helpful in the treatment of RLS, but are threatened with unnecessary restrictions. RLS researchers who participate on a volunteer basis on the organization's Science and Medical Advisory Board were in the forefront in identifying the serious problem of augmentation of symptoms from a class of drugs that has been widely used to treat RLS (dopamine).

I and my fellow Board members at the RLS Foundation are committed to the organization's main goals - improve treatment, find a cure, and increase the knowledge of RLS among patients, their families, and medical service providers. I donate many hours each week to the work of the Foundation because I know it is the best resource of accurate information about RLS and the only philanthropic organization that funds RLS research.

1

Board Member

Rating: 5

As the beneficiary of consistent support from RLS Foundation over many years, I have learned how to advocate for my own needs, have been able to bring research and reliable information to my healthcare providers as well as other sufferers in my family and community, and have observed the Foundation faithfully adhere to the mission it embraces. As a board member it is a privilege to join like-minded volunteers this stewardship.

Previous Stories
2

Volunteer

Rating: 5

Awake and walking the floor one midnight sometime in the 80's, I turned to my new go-to resource - the internet -- and started punching in what I was experiencing: "jumpy legs" (my grandmother's phrase), wiggly legs, legs can't sleep... This inexpert search led me, even in those days of complicated algorithms, to the Restless Legs Syndrome Foundation. That was a watershed moment.

I've been a member ever since. The foundation has always been at the cutting edge of research into what we now know as Willis-Ekbom Disease (WED). More immediately, the Foundation-sponsored programs - Support Groups, Online Sharing Community, eagerly awaited monthly newsletter "Nightwalker" -- have been important means to a life-well-lived.

Key phrases of the Foundation -- "You are not alone" and "In search of a good night's sleep" and "Until there is a cure" are description, uplifting, hopeful. One cannot find anywhere another organization uniquely devoted to this disease. I support it with all my heart.

1

Board Member

Rating: 5

I am impressed by the involvement of the RLS Foundation in the science of the cause and the clinical study of the treatment and eventual cure of this debilitating syndrome. The quality of the science funded by the Foundation is top-notch thanks to the thorough and tough reviews by the Board members. It is an honor to serve as Board member for this Foundation.

2

Board Member

Rating: 5

In the early 1990s I was going nuts with a bad case of restless legs and a prescription of sinemet that seemed to be making it worse. And I couldn't get off of it. Through a friend and the web, I found a then-small group calling themselves the Restless Leg Syndrome Foundation. They steered me to the right doctors who got me off the harmful drugs and on to the right medications and treatments. I learned that they stood for "universal awareness" of this common but not understood disease. They stand for finding better treatments and they stand for research that could lead to a cure for this awful malady that plagued my mother and that drives my sister and me wild.

Board Member

Rating: 5

The RLS Foundation is always available to provide peer reviewed information to patients and healthcare practitioners. The foundation is always available to assist with my questions and concerns. I am so thankful that the RLS Foundation Is so well run and organized!

1

Professional with expertise in this field

Rating: 5

The RLS foundation aims to help those with syndrome, they are highly supportive of meritorious and timely research, and as such they advance our knowledge on the etiology of the syndrome as well as potential treatments.

1 Brian159

Advisor

Rating: 5

The RLS Foundation advocates for those that suffer from restless legs syndrome, aids to help connect persons with RLS with medical experts that know how to treat RLS, and funds cutting edge research aimed at understanding this neurologic disease.

1 Jennifer595

Volunteer

Rating: 5

A foundation created by the patients for the patients.