Restless Legs Syndrome Foundation Blog

Frequently Asked Questions About RLS Foundation Membership

At the RLS Foundation, we appreciate your support through membership. All RLS Foundation members can be proud of the part they play in making our mission a reality and reaching our goals to improve treatments and, through research, find a cure. If you have additional questions about membership, email info@rls.org or call (512) 366-9109.

New Membership

Q: What do I receive when I become an RLS Foundation member?

A: When you sign up for an RLS Foundation membership, you will receive a new member packet in the mail (or via email for international members) that includes the most recent edition of NightWalkers; up-to-date publications on the diagnosis, treatment and management of RLS; helpful handouts to carry with you, like the Medical Alert Card and Special Accommodations card for travel; and more! In addition to these benefits, you will gain unlimited access to resources through the online Member Portal, which contains all RLS Foundation publications, webinar recordings and an archive of all NightWalkers issues.

Q: Is there an annual membership fee?

A: The RLS Foundation receives the majority of its funding from membership and individual donations, plus a small portion from grants. RLS Foundation memberships have an annual fee of $35 in the US and $45 internationally. Over 77% of funds raised go directly toward RLS Foundation programs, including member/patient services, awareness outreach and educational resources developed by medical experts, and funding for the only research grant program dedicated to RLS.

Q: Is my membership fee tax deductible?

A: Yes. Because the RLS Foundation is a 501(c)(3) not-for-profit organization, all contributions – including membership fees and donations – are tax deductible up to the full extent permissible by law. Emails and letters from the Foundation acknowledging your donation serve as gift acknowledgments for tax purposes.

Q: How do I become a member?

A: Choose one of three easy ways: 1) Go to www.rls.org/become-a-member to provide your contact information and pay with a credit card; 2) Call us at (512) 366-9109 to provide all information by phone; or 3) Download a new member form at www.rls.org/joinform and mail the completed form along with a check payable in US funds to the RLS Foundation. Memberships take up to 24 business hours to process.

Q: Is financial assistance available?

A: Absolutely. In addition to offering discounted membership specials twice a year, scholarship memberships are available at no cost to those in need. If Foundation membership is outside of your budget, please email us at info@rls.org or call (512) 366- 9109 to request a free or discounted scholarship membership.

Membership Renewal

Q: When does my membership renew?

A: All annual memberships renew on September 30, according to our fiscal year. However, regardless of your join date, you will receive four issues of NightWalkers (equivalent to one year’s worth of membership) for the calendar year in which you join.

Q: How can I tell if my membership has expired?

A: There are several ways to check the status of your RLS Foundation membership: 1) View the back of your most recent copy of NightWalkers to locate the expiration date of your membership, printed above your name and address. 2) Go online to our website (www.rls.org), click “Member Login,” enter your username and password and click “Renew Your Membership Here.” You will be routed to a page that lists your membership details, including status. IMPORTANT NOTE: Membership status will only be listed if you are first logged into the website with your user name and password. 3) Give us a call at (512) 366-9109 or email us at info@rls.org. We’re happy to check your record in our system!

Q: How do I renew my membership?

A: Go online to our website at www.rls.org/renew, or click “Member Login,” enter your username and password, then click “Renew Your Membership Here.” You can also renew over the phone by calling (512) 366-9109 or by sending a US check payable to the RLS Foundation. Please be sure to specify “Membership” in the memo section of your check.

Q: I accidentally renewed my membership twice. Can you help?

A: A second transaction through the renewal page will be applied as an additional year of membership. If you prefer to apply this as a donation or to request a refund, please contact us right away at (512) 366-9109.

Member Portal

Q: I purchased a membership. Why can’t I open the online resources?

A: After purchasing an RLS Foundation membership, you must also create an online account to gain access to the Member Portal. Go to www.rls.org/login and click “New User Registration.” You will be asked to create a username and a password.

IMPORTANT NOTE: The password must be at least 12 characters, including at least one uppercase letter, one lowercase letter, one number and one special character, and should not include "RLS". Registration requests take up to 24 business hours to be linked to your membership record. We recommend completing this step immediately after purchasing your membership to expedite the process.

People who have moderate to severe restless legs syndrome, or RLS, are four times as likely to suffer from clinically severe depression and suicidal thoughts as the general population, according to a new study by the RLS Foundation. Despite patients’ symptom severity, primary care physicians frequently misdiagnose or mistreat the condition, the research also found.

The study, called ODYSSEY II, also notes people with moderate to severe RLS have less than half the health-related quality of life, or HRQoL, of a fully healthy person. This is comparable to the reduced quality of life from conditions such as psoriasis, chronic obstructive pulmonary disease (COPD), overactive bladder and inflammatory bowel disease.

“This study underscores the toll that RLS has on mental and physical health,” says Charles E. Phelps, PhD, a health economist and senior author of the study. “Depression and suicidal thoughts are major consequences of RLS, in addition to sleep loss. Sleep deprivation caused by RLS can rob people of the ability to live and work normally. Sleep loss also puts people at increased risk of developing hypertension, diabetes, heart attack, stroke and Alzheimer’s disease.”

RLS is a chronic neurological disease characterized by an irresistible urge to move the legs. Many people with RLS endure unrelenting nightly symptoms that severely disrupt sleep. An estimated 7%–8% of adults in the US have RLS, and 2%–3% need ongoing treatment. There are four FDA-approved drugs to treat RLS; however, these medications can lose their effectiveness over time or cause serious side effects in some patients.

In ODYSSEY II, 2,745 people with confirmed RLS completed a survey about RLS diagnosis and severity, associated medical conditions, treatments and medical care.

Among the respondents, 37% had depression that was moderate or worse — a rate four times that of the general US adult population. In addition, 15% had suicidal thoughts — four times the national average. By mapping depression scores to a standard measure for health-related quality of life, the researchers found that ODYSSEY II participants experienced less than half the quality of life of a fully healthy person.

The survey also found extensive delays in diagnosis and treatment. Overall, the average time from when people first began experiencing bothersome RLS symptoms to seeking treatment was 9.8 years, and from there the average time to diagnosis was 2.2 years.

Almost half of confirmed RLS patients (43%) reported that their primary care providers did not take their condition seriously. Those who received treatment at certified RLS Quality Care Centers rated their providers favorably 80% of the time, compared with only 52% of those using non-certified providers. Further, among patients taking opioid medication for RLS, 21% reported difficulty obtaining prescription renewals.

“These findings point to the urgent need for universal screening for RLS in primary care and for provider education,” says Phelps. “People are suffering needlessly with RLS for a decade or more before they receive treatment.”

Results also show limitations in RLS treatment options. Many respondents had stopped taking medications due to side effects or lack of relief. This emphasizes the need for further basic and clinical research to improve RLS treatment options, and find a cure.

A companion survey was completed by 432 people living with partners who had RLS. Results show RLS impacts partners in areas such as sleep, social lives, travel, mood and happiness. About one-third of partners had moved into separate beds, and almost 1 in 20 said that their partners’ RLS was disruptive enough to consider ending the relationship.

Karla Dzienkowski is executive director of the RLS Foundation. “ODYSSEY II highlights the challenges that people with RLS are facing every day,” Dzienkowski says. “We need to shorten the diagnostic timeline and improve RLS medical care. And we need research to find more enduring treatments for the millions of people who struggle with this devastating disease.”

For more details about the survey and key findings, view the executive summary at www.rls.org/ODYSSEYII.

ODYSSEY II was supported by an educational grant from Azurity Pharmaceuticals.

About the RLS Foundation

The RLS Foundation is dedicated to improving the lives of the millions of men, women and children who live with restless legs syndrome, or RLS. Founded in 1989, the Foundation’s goals are to increase awareness, improve treatments and, through research, find a cure for RLS. The Foundation serves healthcare providers, researchers, 6,300 members and an estimated 12 million individuals (10 million adults and 1.5 million children) in the US who have RLS. The RLS Foundation has awarded over $1.8 million in grants for medical research on RLS causes and treatments.