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Restless Legs Syndrome Foundation Inc

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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 serious neurological disease affecting 7% of the world's population. Our mission is to improve the lives of the millions of men women and children living with this often devastating disease. The goals of the RLS Foundation are: 1) to increase awareness, 2) to improve treatments and, 3) through research, to find a cure.

Results: The RLS Foundation has funded $1.8 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: support for over 5000 Foundation members

Geographic areas served: United States, Canada and internationally

Programs: 1) educational webinars and literature to educate and raise awareness, 2) a network of volunteers and contacts to provide support and hope, 3) certified network of RLS Quality Care Centers staffed by leading experts in specialized disease management and, 4) a Research Grant Program to fund vital research leading to better treatments and a cure for restless legs syndrome

Community Stories

73 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

I highly recommend this organization for anyone who is coping with RLS.

Board Member

Rating: 5

I have worked with the RLS Foundation since 2004 when I first received funding from the organization to support my pediatric RLS research. Since that time, I have found the RLSF to be an important resource for collaboration, development of new ideas and connecting with patients, clinicians and researchers alike. The RLSF is unique among patient advocacy organizations for its inclusive philosophy and for its dedication to diversity of thought in solving the RLS puzzle. Being a member of the multiple medical, research and industry organizations, I do not know of a more effective, efficient or authentic organization working on behalf of the wellbeing of people with any sleep disorder.

Marcia B.1

Board Member

Rating: 5

For years I ran in my sleep, ran holes in the sheets, hated going out in the evening and came to a place where I dreaded going to bed! I suffered alone for years, no one had answers until I discovered the RLS Foundation by accident. That accident has saved my sanity!. Through the RLS Foundation I have become more educated about RLS. The Foundation has an AMAZING amount of EXCELLENT material to help each of us. They have written material for those of us with RLS and our family members, they have very outstanding Webinars about different aspects of RLS.
If you suffer from RLS join us in our quest to find understanding and hopefully a cure for RLS.

Board Member

Rating: 5

This Foundation has been life changing for me. When I first connected with it years ago, it provided incredibly valuable information that has helped me understand and deal with my RLS condition. It has continued to provide ongoing information and insights on RLS and keeps me up to speed on the latest developments in the search for a cure and how best to cope with RLS. It is also funding extremely important research into this disease and there has been significant developments over the past five years to better understand what causes RLS in the body. The staff is top notch and very helpful with any questions I have. I recently joined the board and feel privileged to be able to assist this organization in fulfilling its mission.

Client Served

Rating: 5

The RLS Foundation provided our family with scientifically based information that we needed to help our child with RLS.
The staff is so knowledgeable, friendly and helpful. They sent me all the materials that I would need to share with our doctors.
I attended a Support Group in my area and it was so nice to connect with others and to learn from their experiences. Be sure to attend the free monthly webinars and join the discussion board.

Client Served

Rating: 5

The RLS.ORG website has so much information, their monthly webinars have been so helpful in understanding how to cope with this horrible disease. The NightWalkers magazine that they publish and mail quarterly is full of great information. I'm so grateful to have found this organization.

Previous Stories
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General Member of the Public

Rating: 5

My niece and her sister both suffer from RLS during pregnancy. Her doctor doesn't know anything about RLS and we were able to download information specifically about RLS and pregnancy. There is so much information on their website to help patients get through some very difficult symptoms.

General Member of the Public

Rating: 5

The Restless Legs Syndrome Foundation provides extremely helpful publications, webinars, and quality care centers for those in search of managing their RLS. With or without membership the RLS Foundations is always willing to help. Their incredible staff will answer your phone calls of emails if you have a questions in about 48 hours. The RLS Foundation provides a strong voice for all those suffering from RLS. Thank you for your wonderful work!

General Member of the Public

Rating: 5

The RLS Foundation has been the greatest resource since finally being diagnosed with RLS in 2006. It is so refreshing to talk to people that actually know what I am going through. The RLS staff is very knowledgeable and friendly on the phone and always eager to help. Although I live far from the nearest support group, I have turned to the discussion board that acts as a virtual support group. Whenever I can't sleep, I know I can turn to my online discussion board at any time of the night. Thank you for all you do!

General Member of the Public

Rating: 5

The Restless Legs Syndrome Foundation has the most up to date information on RLS. They helped me find a provider when I had no where else turn. Finally getting the appropriate treatment has improved my quality of life tremendously.

Donor

Rating: 5

The RLS Foundation has been a God-sent organization helping me to learn about Restless Leg Syndrome (RLS) and to find informed doctors to help me manage the disorder. I attended their Conferences in 2008 and 2018 and have participated in many of their webinars. I read their newsletters from cover to cover. My RLS started in 2006 (at the age of 65) shortly after a severe attack of Shingles. For 12 years I suffered from nightly disrupted, insufficient sleep. In addition, I experienced jerking legs daily typical of RLS as well as shooting and grabbing pain in my feet and legs. I took the maximum dosage of Ropinirole and then Rotigotine daily. The fact that I got symptoms in mid-afternoon indicates that I had reached augmentation, and my neurologists confirmed that there were no alternative medications available except opioids. Through the RLS Foundation I found a neurologist who got me off the traditional RLS medications and started me on low-dose methadone treatment program. For the past eight months I have been 99% symptom-free and get 8-9 hours of solid sleep each night. The RLS is a low-budget, high-impact organization that plays an indispensable role. It coordinates research, outreach and helps to bring relief to thousands suffering from RLS and related sleep disorders.

Client Served

Rating: 5

RLS can be a very lonely nervous system disorder. Family, friends and even healthcare providers are not familiar with or knowledgeable about RLS. The RLS Foundation works very hard to increase awareness and publishes an exceptional newsletter as well as many other educational materials. The Foundation has not only provided me educational opportunities to learn about my RLS, but also facilitates networking within a growing community.
Two weeks ago, I attended the Foundations Patient Symposium. This was the absolute BEST conference I have ever attended over a 35 year nursing career. I feel so empowered and better equipped to deal with my RLS

Donor

Rating: 5

I've had RLS for 40 yrs. Since finding and becoming a monthly supporter of the foundation I've been educated beyond my wildest expectations. I've suffered in silence for 30 yrs and for the past 10 yrs have had the relief I so coveted for years.......... because of the education and support of the RLS foundation. Cannot rank this foundation higher. It has 'saved the quality of my life'!

Client Served

Rating: 5

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.

Volunteer

Rating: 5

In the throes of the worst RLS I'd ever experienced and a doctor who was making it worse, I found the RLS Foundation's Discussion Board. The members told me of an educational event the Foundation was holding in California; I bought plane tickets, asked a friend in Long Beach if I could sleep on her couch, and off I went. All within one week - quite the leap of faith.

That event saved my sanity and likely my life. I found the information I needed as well as the support of some very special people.

I started to volunteer a year or so later and still do today. I cannot say enough about the staff; they keep telling me how much they appreciate me, when they truly are the ones that are exceptional. I also am fascinated by the people who frequent the Discussion Board; they are so generous and helpful with their support and information, it gives me faith in humanity on a daily basis.

General Member of the Public

Rating: 5

The RLS Symposium was by far the most life changing event for me to date. I could never have the ability, time or money to put forth in order to obtain accesses to the medical professionals, education and information that they afforded me. I will do my best to help the RLS foundation continue their much needed and appreciated efforts to bring hope and healing for RLS patients around the country. A very heart felt THANK YOU to the RLS Foundation

Martha Dorst W.

Donor

Rating: 5

The RLS Foundation has connected me with experts and fellow RLS people. The connection has changed my life for the better. The Patient Symposium was an opportunity to talk 1:1 with experts in the field and gain greater understanding of a condition I have had all my life.

Donor

Rating: 5

The recent patient symposium was transformational. Yes great speakers and organization, but the sharing of information through the Whova app made everything better. We RLS’ers have felt alone for so long, it was wonderful to feel the camaraderie. As a former board member, it is so gratifying to see how the organization has matured.

Client Served

Rating: 5

The people leading this organization truly care about their members and the problems that they face. They recently carried out one of the best and most educational And helpful conferences that I’ve ever attended.The speakers were the experts in RLS from around the nation. The information that they shared literally changed the lives of the attendees. The money that they raise goes to research and advocacy for the needs of RLS Sufferers. Their communication with members is exemplary and continues throughout each year. They work tirelessly to raise awareness with doctors and politicians who make decisions about needed medications. This organization deserves 10 stars!

Board Member

Rating: 5

For many years I suffered every night with restless legs and the inability to get a full night's sleep. My primary care physician attempted to treat me and was successful for a few years. However, the longer I was on the prescribed drug the less effective it became and the worse my symptoms were. I did an internet search and found the RLS Foundation. It was a lifesaver! To see other's stories and the many ways that they attempted to alleviate their discomfort was helpful to know that I was not alone. In addition to sharing stories, the RLSF also maintains a list of qualified providers and certified treatment centers. I was fortunate to be in an area where one of the most prominent leaders in the field practiced and he has managed my RLS now for years. I was so impressed with the RLSF's commitment to research and easy access to staff to answer any questions or just to talk about my disease. Last year I was invited to be considered for a board of directors position and now am a board member. The level of commitment of all of the board members and staff is exceptional and we are all in search of finding the cause and a cure for RLS by funding research through the generous donations of our members.

Board Member

Rating: 5

I have been an RLS patient since childhood. Now in my late forties I have learned how to live with a quality of life I never knew was possible as compared with the decades I was suffering in ignorance. The foundation led me to knowledge, awareness and treatment for the condition. I tried many, many things to ease the discomfort in my legs with no success. It became a 2nd job, searching out ways to eliminate the discomfort. When I learned of the foundation I realized that I was not even close to alone. That this condition is much more common than I ever thought. Through my participation in the foundation I've met people who have lived my story, professionals that have helped me find the best solutions so I sleep with ease. This foundation is changing lives for the better, I am truly grateful to be a part.