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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

85 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

Without the help of the RLS Foundation, I would have little to give -- to my family, to pursuits of work and leisure, to advocacy or altruism. Every day I am grateful for the support and reliable information I have found there.

Besides the knowledge that I am not a lone sufferer but can be in touch with many others through the Foundation's programs, I can be reassured knowing that the information provided is reliable and cutting edge, based on scientific evidence vetted by its impressive Scientific and Medical Advisory Board. The commitment of board members, the dedicated and knowledgeable Executive Director and staff, and the dedication of this entire team to offer help to all sufferers and fund research for better treatment and a cure make this a non-profit I'm proud to be part of.

Previous Stories
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.

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Donor

Rating: 5

I've just joined so I can help a family member, and I'm amazed by the trove of information, the people I've already managed to connect with, and the fantastic symposium they just held (10/17/20) that featured a panel of experts and was incredibly well managed. I run similar events and am very impressed.

Client Served

Rating: 5

This foundation has helped me to identify my condition, seek appropriate medical treatment adn to keep me educated about the medical complications of this disorder. This organization has a strong educational component for those afflicted. It also engages in important advocacy for the disorder and links patients with treatment providers with the appropriate expertise.

Tom R.4

Donor

Rating: 4

An incredible source of knowledge about a disease that is not appreciated or understood by almost all primary care doctors.

Donor

Rating: 5

I am always surprised and impressed with the compassion and assistance I receive from all of the staff at the Foundation. They have provided so many with support and understanding - especially through the recent Virtual Support Group Meetings on Zoom. All of their educational webinars and materials help those who are suffering with RLS to understand the disease better and find better ways to manage their life with RLS.

Donor

Rating: 5

This is an important charity that brings attention to the issue of restless legs syndrome. They have excellent programs/webinars and literature on the issue and are supporting important research on finding more treatments for this disease. It is a very well run charitable organization and I am proud to have been a contributor for many years.

mschwirzke

Client Served

Rating: 5

I can't say enough about the Restless Legs Syndrome (RLS) Foundation and how important it is to its members: They serve as an all-important advocate in our struggle to find better treatments and eventually a cure for RLS. I've suffered from the condition for over 20 years and have been a member of the foundation for nearly as long. The foundation offers assistance in many different ways, ranging from hosting webinars to discuss relevant & timely RLS-related topics to publishing information to help educate members, as well as physicians and the general public. If any non-profit deserves this accolade, it's most certainly the RLS Foundation!

Client Served

Rating: 5

RLS Foundation is a wonderful resource for people with Restless Leg Syndrome. Many publications are offered plus webinars that are exceptionally informative. Through the foundation, access is available for the best of care. They're support is phenomenal. I feel very fortunate to have the foundation and it's resources available. I live in a large city, but there are not a lot of highly experienced resources available.

Donor

Rating: 5

I had not really known very much about Restless Legs Syndrome until I happened to talk with my cousin. He and other members of his family suffer from the disease. Listening to him talk about the sleepless nights, the associated pain and weariness, I began to wonder if anyone was doing anything about this "under the radar" disease. I found the Restless Legs Syndrome Foundation and began exploring the resources that they provide. Talking with members of the family, I came to appreciate how supportive -- life-changing, really -- the Foundation had been in their lives. The support groups, the scientifically-vetted materials, and the support of research have helped my relatives manage what otherwise would have been a devastating and joy-sucking condition.

I have worked at many non-profits as an employee and as a manager. I always look at the financial statements before I offer support to make sure that they are run prudently and devote the contributions they receive to solving the problems they talk about. I was surprised and pleased to see how lean an operating the Foundation runs. Gifts given to them really go to support the work they do and the research they encourage. So I am glad to be a supporter as a way of helping my cousin and his family live more pain-free lives.

General Member of the Public

Rating: 5

RLS FOUNDATION IS A WONDERFUL LIFE ENHANCING RESOURCE FOR THOSE OF US WHO SUFFER FROM THIS DEBILITATING DISEASE.--TO DATE THERE IS NO CURE FOR RLS. ONE CAN ONLY MANAGE THE SYMPTOMS. THE RLS FOUNDATION PROVIDES A WEALTH OF INFORMATION ON HOW TO COPE & HOW TO IMPROVE OUR QUALITY OF LIFE. THE FOUNDATION IS A STRONG TIRELESS ADVOCATE WITH STATE AND FEDERAL LEGISLATURES, ON PROMOTING AN AWARENESS OF THIS DISEASE, IMPROVE TREATMENTS AND HOPEFULLY A FUTURE CURE. THE RLS FOUNDATIONS EXECUTIVE DIRECTOR AND HER PROFESSIONAL STAFF ARE INCREDIBLY RESPONSIVE TO THE INDIVIDUAL CONCERNS OF THE RLS PATIENT COMMUNITY

1

Professional with expertise in this field

Rating: 5

The RLS Foundation is the most reliable and authoritative source on Restless Legs Syndrome in the Northern Hemisphere. Thank you because all of us are in this together and we can count on this organization characterized by strong leadership, competent staff, and the dedicated and generous boards of volunteers: the Board of Directors and the Scientific and Medical Advisory Board. As a former board member , donor , group leader and contact for this group, I can strongly recommend you must learn more by searching www. rls.org. Why? I know because I have battled this disease for over 30 years and found this Foundation to be excellent in their information and determination to eradicate this disorder.
Régis Langelier, PhD ,
Licensed Psychologist , Maine

1 Rustsmith

Volunteer

Rating: 5

I have been both a volunteer for and general member of the RLS Foundation for many years. They continue to provide critical support for both myself and the rest of the RLS patients in the US and around the world. They information, research support and patient support that they provide is not available from any other organization.

Previous Stories
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Volunteer

Rating: 5

When I was first diagnosed with RLS, my doctor simply gave me a prescription and sent me on my way. Fortunately, I found the RLS Foundation and the information that they provided help to educate me on what I needed to do to better control my condition. I have been a volunteer with the Foundation ever since and am in total support of the work that they do in funding research and advocating for this widespread, yet totally unrecognized condition. Without the Foundation, I would not be able to live the life in retirement that I always envisioned.

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General Member of the Public

Rating: 5

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

1

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.

Board Member

Rating: 5

I have had RLS for about 25 years and essentially diagnosed myself, as my doctors at a major teaching hospital in the United States had never heard of it. Thank goodness, they were willing to learn, and based on what information we could find, I tried iron supplements and various other medications for a number of years, then the generic for Requip (ropinerol) for about 10 years. Fortunately, I never developed augmentation, but eventually the ropinerol was not effective. About the time my doctor switched me to the generic for Mirapex (pramipexole), I found the RLS Foundation on the internet. The foundation is a wonderful source of information and support, and I recently joined its Board of Directors, thanks to the sponsorship of a college classmate who is a long-time member of the organization. I am looking forward to working toward the three main goals of the RLS Foundation, especially the goal of raising awareness of this surprisingly common and often devastating disease.

Phaedra N.

Professional with expertise in this field

Rating: 5

So grateful to Restless Legs Syndrome Foundation. I've had RLS since 1995 and really appreciate all the support and research they've done since 1992. Happy 25 Year Anniversary!

Board Member

Rating: 5

The ED is so amazing and knowledgeable. The entire staff is helpful and on the ball! It has been a pleasure working with all of them.!!

Previous Stories

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!

General Member of the Public

Rating: 5

Incredibly responsive staff! Answered questions, provided contacts with knowledgeable physician nearby, and supplied clear printed materials. Grateful for support group,thewebinars, and the newslette.

This is a terrible disease; the Foundation is a great ally.

General Member of the Public

Rating: 4

I've had restless leg for years. It started to get worse when I was pregnant with my 3rd child. Surprise, surprise I was anemic. I have been trying to get my ferritin up every since, 15 years now. I also have inflammatory arthritis which also adds to my anemia of chronic disease. Strike two! RLS foundation gave me some suggestions on how to take iron so it will absorb better. Also, advise on antihistamines, which can make RLS worse. They were very quick to answer my questions. Thankful for RLS and all their work.
Lori

Judy L.1

General Member of the Public

Rating: 5

My name is Judy Lyons and I live in Lubec, Maine. I found RLS Foundation Inc. one night when I could not lie down and try to sleep because of this god awful disease. I think I may have even had RLS when I was a kid, but did not know it. I have been treated for RLS for at least 10 years. The biggest problem I have is living in a rural area too far away to find a good RLS doctor. The first medication I was put on was Requip. At first this helped a lot, although it made me nauseous every night I took it. Then my RLS kept getting worse and worse and starting earlier in the day. Most days I was in agony trying to set at my desk to do my job (Receptionist at the local Medical Center). Then I was searching the internet about RLS, trying desperately to find some help and I discovered AUGMENTATION. So I knew I had to get myself of Requip. I did not know I should wean off the dose I was on so I just stopped taking it. Sure wish I knew about RLS Foundation at that time! Needless to say I went through living hell getting off the Requip. I lasted almost 3 months, with only bits and pieces of sleep, most nights was just up walking the floor and rubbing my legs all night. Then I would have to go work all day. It was an experience I never want to repeat. Finally I could stand it no more, so I went to the doctor who I was seeing at the time (they changed frequently at the Medical Center for a few years) and she thought the answer was a sleeping pill. Well I really didn't think that would help, but I tried it. That of course made RLS worse. So then tried a different medication (don't remember what now) and that did not help either. Then Klonipen, the short time I took this it did help. But then I found out with this medication I would have to do urine checks and pill counts every month and my insurance did not pay for that, so I go off that medication. ( I would like to remind you that I work with these doctors every day, not like they only see me once in a blue moon). The I tried Horizant when that came out, could not take that, made me feel really funny. So the next medication was Lyrica, and I must say that worked like a dream, although had to keep upping the dose. Then in 2014 I had a hysterectomy and was on pain medication for a couple of weeks, no RLS!!! When I stopped the pain med, the Lyrica also stopped working, I was on 450Mg a night by then. My doctor did not want to up the dosage any more. So she prescribed Mirapex. Told her I did not want to take another dopamine drug (had learned all about it by then). She said the only she could give me, and unless I tried it no pain specialist would prescribe anything different (had to rule it out) So I started the Mirapex at .25mg, then went to .5 mg, now at .75 mg. I reluctantly went to the .75 but could not take the RLS anymore. I find the .75mg works a little better than the .5, but it does not give me relief every night. I am so tired of being treated like a guinea pig by the local doctors who do not know much about RLS. I shared a copy of Night Walkers with her a few weeks ago, hoping she would learn something. But would not really matter if she did, since she is leaving in 3 weeks anyway. So now I will have to go to yet another doctor, just praying for one that knows something about RLS, or at least believes what you tell them you are going through. - I have learned so much about this disease from the RLS Foundation site and facebook page, and I am so thankful for all the research you are doing, Hoping against hope someday there will be help for people like me. It is so nice to have people know how you feel and not laugh at you. So from the bottom of my heart I thank the RLS Foundation for all that you do.
Judy Lyons

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.

1

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

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.

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.

2

General Member of the Public

Rating: 5

RLSF is a solid, trusted source of information on this debilitating condition for members of my family. The research that RLSF funds offers help directly to them and to their physicians to improve their daily lives.

3 conniejeschke

Volunteer

Rating: 5

I found the rls.org site several years ago. It was the most wonderful thing that I could have done. I was at my breaking point. I couldn't ride in a car for more than 30 minutes or so without getting out and walking for several minutes. I was not sleeping more than a few hours a week. I was miserable. I found the site and all the information that they have. This lead me to finding a doctor and medication that have helped me to live a normal life. I have since become a support group leader and I love sharing my stories and hearing all of their stories.

Previous Stories
3

General Member of the Public

Rating: 5

I found my wonderful doctor on the restless legs website. I wasn't sleeping but an hour or two a night for years. He adjusted my meds and I have been sleeping great for the last five years now. It is such a relief to sleep like a normal person does.

1

Volunteer

Rating: 5

The Restless Legs Syndrome Support group in Skagit Valley, Washington has been helping people struggling with this disease since 2002. They meet three times per month, providing education, information and support for victims and their families. I am a member of the steering committee, which plans, presents and evaluates the program. We also provide year-round telephone support offered by the 5 committee members. We advertise our meetings by email to interested parties and newspapers.

2

General Member of the Public

Rating: 5

I am very thankful for all of the great work these people do. They give us Hope for this very ugly disease we suffer from. They have so many contacts in the research field along with the TOP RLS doctors in the USA.

Thanks!!!!

3

General Member of the Public

Rating: 5

The RLS Foundation is a one stop shop for all information regarding RLS - background, medications, state-by-state Dr. list, expert presentations and more. They bring together RLS sufferers through social media and their support group network. It is great work to bring together people who understand what it is like to suffer with a disease that the general public has limited knowledge about. I trust that the Foundation is making strides to not only bring more awareness, but to find a cure.

1 Lyn-Ellen S.

General Member of the Public

Rating: 5

If you suffer restless legs you think you are alone with no help and no one to understand what you are going through day after day night after night, that is until you find out that RLS is there and what a relief it is that someone is trying to bring a voice to all sufferers out there.

2

Volunteer

Rating: 5

As a friend of a strong young lady living with this disease, I am thankful to know that the RLS Foundation is there to provide support and trustworthy information for individuals and their families/friends who are affected by this disease. A truly great organization.

2

Donor

Rating: 5

RLS plagues many of the women in my family and I am grateful the Foundation provides support and guidance on treatment and coping mechanisms for those who suffer from RLS and medical professionals treating RLS.

3 Beth145

General Member of the Public

Rating: 5

The Restless Leg Syndrome Foundation provides much needed up-to-date information on this syndrome which is difficult to understand for many - even those in the health care profession. After nearly 10 years of trying to educate my mother's providers at her skilled nursing residence, the staff still don't seem to understand her symptoms or how to best treat her. I'm thankful for the on-going efforts of this valuable foundation!

2

Professional with expertise in this field

Rating: 5

Fantastic organization.Trusted source for pertinent and useful information and guidance. They provide support to patients and families through awareness and education. I love this organization

5

Volunteer

Rating: 5

This Foundation and it's website have been a lifeline for people suffering from RLS. I actually first found it in the middle of the night when I was desparate for some help with my RLS. On the Discussion Board I found a medication to try which my doctor had not been aware of. I was able to sleep again...for awhile, anyway.

Review from Guidestar

2 Sk58ATgmDOTcom

General Member of the Public

Rating: 5

i felt I should delete my posting, being that it was way too extreme. I do not condone any drastic measures such as I had mentioned in my posting.
I think RLSF Inc is a wonderful organization, and hope to manage to logon to the site for emotional support.
Thanks, [email protected]

Comments ( 1 )

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RLSFoundation 09/01/2015

Hi Sk58ATgmDOTcom ... Please call (512-366-9109) or email ([email protected]) if you need assistance in logging in to our website. We are here to help. Thank you for the kind words & support!

Donor

Rating: 4

Please, I have been a member for over 20 years. I need the information for surgery and hospitalization. I cannot access that information.

Comments ( 1 )

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RLSFoundation 09/01/2015

Hi petuniajenkins, We are sorry you were unable to access the information you needed. Please call (512-366-9109) or email ([email protected]) so we can troubleshoot your member account and get you the information you were interested in. Thank you!

2

Client Served

Rating: 5

It was so comforting to find an organization that totally understand restless leg syndrome and the affect it can have on one's life. Sleep depreivation is serious. I've learned about side effects of medications used to treat the disease, that it is genetics, that there are things one can do from a nutritional and supplemental aspect to help. They have now established quality centers. The webinars are very educational. They've giving me hope. This is such a stupid and silly disease. People have a very difficult time understanding it if they have never been affected. This organization is awesome.

3 Joan45

Client Served

Rating: 5

I have mobility issues, and if given the choice to be able to run and dance OR be rid of WED/RLS, it would be a hard choice. This wonderful foundation has done MAJOR things for the mere 7% of us who are misunderstood sleep & relaxation deprived victims. Without the foundation we would also lack knowledge & any relief. Few doctors are knowledgeable, we must self advocate. Now the foundation has several centers and I will be travelling to Baltimore soon to see Dr. Earley. The meds for this disease tend to augment or lose effectiveness, so treatment is ongoing. A big plus is that Dr. Earley will treat & prescribe online. I am hopeful for myself and my son who is 37 years old and already experiencing symptoms which deprive him of sleep.

2

Client Served

Rating: 5

I began experiencing WED/RLS at about age four. My father had the disease as an adult and both my children are now experiencing symptoms in their 20's. I am currently 59 years of age and would describe my symptoms as extremely severe. I use to be able to control symptoms with regular exercise.
As I aged and had three pregnancies my symptoms continued to worsen. During my middle thirties my symptoms increased causing severe sleep deprivation. I was married, raising children and working as a nurse. Despite exhaustion I did manage to function at a fairly high level. I had over the years sought lots of medical assistance from doctors whom would look at me like I was crazy when I would describe the symptoms. I literally could find no help. As my sleep deprivation worsened I became depressed and was treated with antidepressants which helped my mood and possibly improved my sleep a bit.

I believe in the late 1990's I saw a commercial for Mirapex which described my symptoms completely. I was so excited and made an appointment with a sleep specialist who did prescribe Mirapex for me. For about 2 years it was a miracle drug for me. I was getting major relief from my WED symptoms. However as time progressed I needed to continually increase the dose. I developed compulsive gambling which I had no idea was related to the Mirapex. I had never enjoyed gambling previously and was completely thrown by this compulsion. I attended Gamblers Anonymous, never carried cash, tried many things and was unable to control the gambling. My gambling was rightly fully so causing severe marital issues . It was on a commercial for Mirapex that we saw compulsive gambling as a possible side effect. We made an appointment with my sleep specialist, he stopped the Mirapex cold turkey and started me on a very low dose of Requip. The full onslaught of my WED symptoms returned. The Requip did not help and I was in severe pain and unable to sleep at all. Gabopentin was also of no help. Later I learned that this transition from Mirapex to Requip may have been easier if my physician had slowly reduced the Mirapex and started the Requip.

Im sought help from my Family Physician who referred me to a neurologist.
By that time my sleep deprivation was so severe that as I would pace the floors at night I would literally fall asleep standing and fall to the floor. Unfortunately the neurologist I saw was not well informed on R
WED, diagnosed me as in a manic phase of bi -polar with the WED symptoms a side effect of the mania. He prescribed Lamictal. As I understand there is a 1/ 100,000 chance of a serious reaction to Lamictal. Within 24 hours of beginning the medication I was having severe visual and as
auditory hallucinations, extreme physical agitation with continued severe WED symptom, and massively suicidal. With a bi-polar diagnosis, the neurologist and emergency room physicians did not believe that I was having this rare reaction to Lamictal. No one would listen. At one point another neurologist was called to the E.R., questioned why I was on the Lamictal and placed me on Sinemet.
I did experience some relief of symptoms with the Sinemet. A few days later when I called my neurologist for a refill of,the the Sinemet he angrily refused. At that point my husband said I needed to stop the Lamictal, basically stating ' you saw the neurologist initially as an exhausted woman and he has made you crazy. Stop the Lamictal'. I did as he suggested and so thing a few days my mind began to clear. I made an appointment with the neurologist I had seen in the Emergency Room. Due to my history of reactions to medications he was concerned about prescribing anything other then Sinemet, but at least I was getting some relief and was no longer feeling crazy.

I am now 6 years post Lamictal incidence. The Lamictal has caused my WED to worsen, have had definitely cognitive damage and am no longer able to work. Methadone is the only medication that now relieves the pain of WED, but unfortunately causes severe debilitating depression. Without the Methadone, the electric voltage type pain, need to be aggressively moving at all times 24 hours a day and the inability to sleep makes my life unlivable. The Methadone increases my depression to such a severe level that 50% of my days, all I want to do is die. I know it is the Methadone because when I stopped taking it and used Oxycodone my mood improved significantly. Unfortunately the dose I need to control the pain is higher then my neurologist is comfortable in prescribing. Therefore I had to return to the Methadone.

WED truly controls my entire life. I am no longer able to work at a job I truly loved, have lost friends because the depression can make it too difficult to socialize at a normal level, my husband and I can not do the things we hoped to do at this point in our lives, and everyday is a struggle for me.

The WED Foundation has truly been a life saver for me. The information, support from administration and the ability to read others stories has as I repeat a life saver. I so not say that lightly. It truly has stopped me from injuring myself and has at times given me reason to hope.

Thank you.

General Member of the Public

Rating: 5

I am almost 75; my first extreme episode of RLS occured about 7 months into my first pregnancy, at the age of 22. Although my grandmother and my mother both had what they called "the heebie-jeebies", I did not associate my symptoms with them. Much like another reviewer mentioned, a small blip in Modern Maturity (AARP magazine) in the early '90's finally gave a name to what I had suffered continually with for over 30 years! By then, I had discovered by trial and error that limiting caffeine and sugar, and regular exercise helped the symptoms, but spent untold hours watching TV or reading on the floor because I could not sit. Traveling became miserable; my husband finally moved into the guest room because I kept him awake due to getting up several times a night to do leg exercises on the floor, or to take a hot bath.

After learning that my misery actually had a name, and getting my first computer, I found the RLS website, with its interactive forum. Shortly thereafter, I also found a neurologist at a nearby teaching hospital who was beginning to treat patients like me. Fortunately, I had learned that some pain meds greatly relieved the symptoms, and he was willing to prescribe low doses for my worst nights.
Then, along came all the research showing that Requip and other DAs were also effective for many RLSers.

For the last 10 years or so, I have been able to combine a low dose of ropinerole at night, with a low dose of different types of pain meds mid-afternoon (I alternate periodically to lessen the chance of addiction and rebound). Most nights, I sleep 7-8 hours, with only occasional break-throughs. I do often have early morning fatigue, which my doctor says is probably caused by the ropinerole, but a small price to pay for sleep! Of course, I still exercise, use very little sugar and caffeine (especially after noontime), and hot baths are my go-to if I forget to take my meds on time.

Thank you, WED Foundation, for keeping us up to date with helpful information, and most of all, for the continuing research. I have often remarked that everyone should have to spend one night with severe RLS, without medication.........then we wouldn't have to have so many conversations with others about what living with it is like!

Volunteer

Rating: 5

I have been a volunteer with RLS/WED since 1994. Why did I start and why do I continue? It is because this condition can be extremely disruptive to one's life and can rob victims of years of joy. The pain, confusion, health risks, and depression are magnified by misunderstanding, confusion about diagnostics and treatment, and jokes based on ignorance.

Above all, those of us with RLS/WED need a reliable source of information, including an organization you can trust to debunk quackery. We are fortunate and I am grateful that we have such an organization in RLS/WED which continues to grow and evolve to serve our community better.

Consider joining, or using, or offering your story to help others, because it is a tough condition.