Restless Legs Syndrome Foundation Blog

Give A Little, Change A Lot

Monday, December 02, 2024

December 3, 2024

Give A Little, Change A Lot: The Power of Giving Tuesday

You’ve endured the whirlwind of Thanksgiving planning, the frenzy of Black Friday and the commotion of Cyber Monday! After spending time around the dinner table reflecting on what you’re thankful for, Giving Tuesday offers the opportunity to pause and transform your gratitude into action. Giving Tuesday, celebrated the Tuesday following Thanksgiving, is a global movement that encourages people to contribute to the charitable organizations that largely influence their lives.

During this season of thankfulness, consider helping the RLS Foundation meet their goal of raising $10,000 by the end of this Giving Tuesday, December 3. The importance of this day extends beyond financial contributions – it’s about fueling hope, raising awareness, and investing in the future. Thanks to your support, the RLS Foundation has had a year filled with remarkable achievements. Let’s take a moment to reflect on these milestones and celebrate success.

Record-Breaking Research Funding

Part of the RLS Foundation’s mission is to fund critical research that aims to improve our understanding of RLS and develop more effective treatments. For the first time, the organization is funding four RLS research studies in the same year! This historic level of support is made possible by our dedicated members and a collaboration with the American Academy of Sleep Medicine Foundation (AASMF), which co-funded one of the grant awards. Each project aims to deepen our understanding of the genetic, biochemical, and cellular mechanisms of RLS. Learn more about each researcher and their study by clicking here.

Expanded Education and Awareness

Another crucial aspect of the RLS Foundation’s mission is enhanced education and awareness. Member support makes it possible to create and distribute valuable resources, organize awareness campaigns, and promote a better understanding of RLS among healthcare professionals. Resources include over 30 patient handouts, a monthly webinar series, a quarterly magazine NightWalkers, and a free physician education webinar series. All materials are reviewed periodically to ensure that you and your physician are receiving accurate information.

A Strong Support Network

For many with RLS, connecting with others who share similar experiences offers comfort. The RLS Foundation maintains weekly virtual support group meetings and an online Discussion Board that allow individuals from all corners of society to engage with each other. Support group leaders also host local in-person meetings while support contacts can be reached by email or phone. The RLS Foundation is thankful for the dedication of over 60 volunteers who make up our support network!

Impactful Advocacy

The RLS Foundation hosted its annual Hill Day event on September 9! RLS community members, expert physicians, and the organization’s staff and Board members united in Washington, DC to advocate for the needs of the RLS community by meeting with congressional representatives. With the incoming congressional appointments in 2025, there will be new representatives to engage with and educate on the community’s legislative priorities.

Community Empowerment

Though the RLS Foundation is a membership organization, it is dedicated to helping all who are affected by the disorder. Thanks to member support, we are able to provide scholarships to those who are challenged financially. The RLS Foundation is proud to ensure that no individual is denied access to crucial information and resources.

Thank You!

The importance of Giving Tuesday lies in its ability to inspire philanthropy and unity. By helping us reach our goal of raising $10,000 today, you will further our outreach related to RLS research, education and advocacy. Mark your calendar for Tuesday, December 3 and embrace the joy of giving! Give a little to change a lot.

Call for RLS Research Grant Proposals

Monday, December 02, 2024

Call for RLS Research Grant Proposals

The RLS Foundation, a 501(c)(3) nonprofit corporation and aspires to achieve universal awareness of the disease, to support the identification of effective treatments, and to find a cure for the millions of men, women, and children who suffer from RLS.

The RLS Foundation calls for grant proposals of a one year-duration, with funding levels of up to $50,000 (including 8% for F&A costs), based on the number of funded applications. A renewal or extension of a previously funded proposed project may be considered, but any extension would be subject to the regular competitive approval process for year two.

The number of total awards will depend on the number and quality of the applications submitted. Currently, the Foundation is expecting to support up to 2-3 proposals for the 2025 – 2026 grant cycle.

Spring 2025 Priorities

For this round of funding, the primary research priorities are:

Augmentation: Identifying who is at risk for developing augmentation (e.g. through genetic markers, iron status, or other at-risk clinical phenotypes) and who is lower risk, to understand if there is a subset of RLS patients who can be more safely treated with dopamine agonists long-term.
Therapeutics: Elucidate the mechanisms involved in the therapeutic and unwanted side effects, (e.g., augmentation) of RLS drugs, novel therapeutics (i.e. medical cannabis) and advance knowledge toward development of more durable treatments.
Disease risk and expression: Elucidate genetic, epigenetic, biologic factors associations with disease risk or with different RLS phenotypes.
Other topics: Other research areas related to RLS may also be accepted for funding consideration.

Requirements

Eligibility: All institutions within the United States, Canada, and other countries where supervision of grant administration is possible are eligible.
Human Subject Protection: Approval by the institution’s human investigation committee is necessary for all projects that involve human subjects.
Recombinant DNA Research and Animal Welfare: The RLS Foundation has adopted the regulations pertaining to these areas, as established by the US Public Health Service.
Multiple Awards: Individual investigators may receive a maximum of one RLSF grant award of any kind in a given year.

Application process

Submission is a two-step process requiring both preapplication (letter of intent) due no later than January 24, 2025 and full application as indicated below. Both preapplication and, if invited, full application, will be submitted via a specific link.
The application title and all information for the Principal Investigator (PI), Business Official(s), Performing Organization, and Contracting Organization must be consistent throughout the entire preapplication and full application submission process.
If a joint submission by multiple PIs (Partnering PI Option): The Initiating PI must complete the preapplication submission process and submit the contact information for the partnering PI. The Partnering PI(s) will then be notified of the preapplication submission separately by email.
Fund disbursement for successful applications will be contingent upon documentation of approved institutional review or animal user protocols, as appropriate.

Preapplication (Letter of Intent) Submission Components

The Letter of Intent (LOI) should consist of preproposal narrative with:

Rationale: State the hypothesis and reasoning on which the proposed research project is based. Briefly describe how preliminary data, scientific rationale, and referenced literature support the research hypothesis. Clearly demonstrate that there is sufficient rationale for the project. (Limit: 500 words)
Focus Area: State the Research Priority that the proposed study seeks to address. Select one or more from the current research priority list.
Specific Aims and Study Design: Clearly describe the type of research study being proposed. Concisely state the project’s objectives, specific aims, and ultimate endpoints. As applicable, briefly describe the proposed recruitment strategies and methods, how they will accomplish the project’s aims, as well as the outcome measures that will be used. (Limit: 500 words)
Research Team: Provide a description of the research team that clearly demonstrates the appropriate background and experience to accomplish the proposed work. (Limit: 250 words)
Impact and Relevance to RLS: Describe how the proposed work will impact healthcare and quality-of-life needs for patients and/or family members or beneficiaries living with RLS. (Limit: 250 words)

In addition, applicants should provide a reference list (one-page limit), list of abbreviations, acronyms, and symbols, and key personnel biographical sketches (NIH format). All attachments need to be uploaded in PDF format.

Letter of intent (see attached sample application) to be submitted starting December 4, 2024 online here by no later than January 24, 2025 (CST).

Applicants will be informed in late February if their proposal is invited for a full application.

Full Application Submission Components

If selected, the full online application consists of a cover page that must be signed by the university or organizational representative(s) and the principal investigator, an abstract with a clearly stated hypothesis, and the proposal that includes:

Project Narrative (no more than 5 pages), with background, hypothesis / objective, specific aim(s) and research strategy. Within the research strategy section, describe the study design, methods, models, and analyses in sufficient detail for assessment of the application. Explain how the research strategy will meet the project’s goals and milestones within the proposed period of performance. Address potential pitfalls and problem areas and present alternative methods and approaches. For studies performing prospective human subject recruitment or observation: Describe the population(s) of interest. Describe how data will be reported.

Budget and budget justification

Biographic sketches of each investigator (NIH format)

Disclosure of previous RLS Foundation support and other sources of funding.

Full Applications will need to be submitted online, with the link provided in LOI acceptance notification, and the deadline for the full proposal submission is April 11, 2025. All attachments need to be uploaded in PDF format.

Award Process

Schedule: The RLS Foundation Scientific and Medical Advisory Board (SMAB) and external reviewers strive to review all applications in a timely manner. The goal is to provide the results to the LOI applicants within two months of the respective grant deadline and four months after submission of the full proposals.

Review: The SMAB will evaluate and rank the full proposals based on scientific merit. Overall impact, significance, approach, innovation (conceptual, technical) and individual criteria will be taken into account for funding consideration.

Award: The RLS Foundation Board of Directors will make final award decisions in accordance with available funds, based on the evaluation provided by the SMAB and other prioritization factors as determined by the Board of Directors.

Recipient Requirements: In order to receive an RLS Foundation research grant, the recipient must:

Within one month of the grant award, provide a photo of the grantee and a one-page article for publication in NightWalkers (the Foundation’s quarterly news magazine), describing in layman’s language the importance of the research to the RLS community and the recipient’s intention for future research.
Use the terminology restless legs syndrome in all grant-related publications and correspondence.
For 1-year awards, agree to submit a progress report after 6 months and 12 months from the starting date of the grant.
Acknowledge the RLS Foundation’s support in any published work or audiovisual productions resulting from research that the Foundation has supported. (Provide PDF copies of any reprints to the Executive Director of the RLS Foundation.)
Agree, if RLS Foundation funded research is commercialized or generates revenues, to devote a portion of the revenues to repaying the entire amount of the grant received, plus interest at the-prevailing prime rate, to the Foundation. Interest will be calculated semi-annually on the unpaid portion of the amount to be repaid.

Lastly, the intent of the RLS Foundation Research Grant Program is to provide seed monies to support researchers in their research endeavors and help them obtain the data to successfully request large scale funding elsewhere.

Thus, while an application may be also submitted to other organizations or agencies for funding, the applicant may not receive funding from the RLS Foundation, if any of those other projects are awarded or funded prior to the award being granted by the RLS Foundation.

The applicant will notify the RLS Foundation in writing of award funding for the same proposal from another organization and withdraw the application from consideration.

Costs Not Permitted

The following costs are not allowable under the RLS Foundation’s grant programs:

New construction, alterations, or renovations of existing facilities
Consultant fees, unless specified in the original grant application
Travel and healthcare costs

RLS Research Grant Program

The RLS Grant Program started in 1997 and has funded over 50 grants totaling over $2 million. Membership support is the primary funding support of the RLS Foundation Research Grant Program. Help us to continue to fund promising new RLS research and end RLS for future generations.

Drowsy Driving Prevention: Sleep First. Drive Alert

Monday, November 04, 2024

November 4, 2024

Drowsy Driving Prevention: Sleep First. Drive Alert.

Founded in 1990, the National Sleep Foundation is an independent nonprofit dedicated to improving health and well-being through sleep education and advocacy. Additional information on the National Sleep Foundation’s Drowsy Driving Prevention Week® can be found at www.theNSF.org.

Vehicles today are equipped with all types of safety features – from lane assistance to backup cameras to automatic braking systems. But the most important safety feature of the car is you – the driver. Each time you get behind the wheel of a vehicle, you commit to being a responsible and safe motorist for yourself and everyone else on the road.

November 3–9 marks Drowsy Driving Prevention Week. This annual campaign, led by National Sleep Foundation (NSF), raises awareness by educating the public on the dangers of drowsy driving and how to prevent it. Drowsy driving is impaired driving, just like drunk, drugged and distracted driving. While common, drowsy driving is also preventable.

According to data from NSF, drowsy driving is dangerously common. Six in 10 drivers (62%) reported getting behind the wheel while so tired that they had a hard time keeping their eyes open – that’s about 150 million US motorists. According to the National Highway Traffic Safety Administration, motor vehicle crashes related to drowsy driving account for roughly 20% of all accidents and an estimated 100,000 crashes each year.^1,2 Some people at an increased risk for drowsy driving include young adults ages 21–34 and men.²

NSF assembled an expert panel to establish consensus guidelines that provide a clear definition of when an individual is categorically too sleep deprived to operate a motor vehicle. This consensus statement indicates that drivers who have slept for two hours or less in the preceding 24 hours are not fit to operate a motor vehicle.^1,3 The guidelines further note that most healthy drivers would likely be impaired if they’ve had only three to five hours of sleep during the prior 24 hours.^1,3

Additionally, teenagers are an at-risk group for drowsy driving. “Recent NSF data showed many teens, early in their driving experience, say they’ve already driven while drowsy. Overall, teens know the risks of drowsy driving but don’t think it’s as risky as other forms of impaired driving,” said Joseph Dzierzewski, PhD, senior vice president of research and scientific affairs at the National Sleep Foundation. “There’s a lot we can teach our young drivers about the importance of getting the sleep they need before they get behind the wheel.”

One study compared the effects of sleep deprivation and alcohol on performance.⁴ Results found that being awake for 17–19 hours is comparable to having a blood alcohol content of 0.05%. People were also found to have decreased reaction time and hand-eye coordination. After longer periods without sleep, performance reached levels equivalent to a blood alcohol content of 0.1%, suggesting that lack of sleep can severely impair a person’s ability to safely operate a vehicle.⁴

Drowsy driving can impact anyone, and it may present increased challenges for those with sleep-related conditions. Some medications can cause drowsiness, so talk to your doctor if you have this side effect from your medications. Watch for signs of excessive sleepiness, such as yawning repeatedly or difficulties focusing. To prevent accidents related to drowsy driving, try the following:⁵

Get sufficient sleep on a daily basis. NSF recommends 7–9 hours for most adults and 8–10 hours for teenagers.
Monitor yourself for common signs of drowsy driving, including heavy eyelids, frequent yawning, trouble maintaining lanes or distance, missed turns, and quick irritation with common occurrences (such as traffic).
Use a rideshare service or ask a friend or family member to drive if you are concerned about your ability to safely operate your car.
Stop driving and take a short nap if you are feeling tired.
If possible, avoid driving between midnight and 6 am or 1–4 pm. Accidents related to drowsy driving are more likely to occur during these hours, as people experience a natural dip in their circadian rhythm.
Avoid alcohol consumption before getting into a vehicle. Alcohol can increase sleepiness and impairment.

“At NSF, we’re dedicated to helping everyone prioritize their sleep for health and safety. Getting enough quality sleep to be your Best Slept Self is a critical factor in our ability to drive safely,” adds Dzierzewski.

As you navigate your busy life, don’t let the dangers of drowsy driving take a back seat. The NSF’s Drowsy Driving Prevention Week campaign slogan is “Sleep First. Drive Alert.TM” The best way to honor this motto is to prioritize the safety and well-being of yourself and everyone else on the road. Don’t hesitate to call a family member or friend or to use a ride-sharing service if you are questioning your ability to drive responsibly.

Sources

1. Breaking Report from the National Sleep Foundation Update on Drowsy Driving; 2022. https://www.thensf.org/wp-content/uploads/2022/11/National-Sleep-Foundation-Breaking-Report_Drowsy-Driving.pdf

2. Tefft, B.C. (2024). Drowsy Driving in Fatal Crashes, United States, 2017–2021 (Research Brief). Washington, D.C.: AAA Foundation for Traffic Safety.

3. Czeisler CA, Wickwire EM, Barger LK, et al. Sleep-deprived motor vehicle operators are unfit to drive: a multidisciplinary expert consensus statement on drowsy driving. Sleep Health. 2016;2(2):94-99. doi:10.1016/j.sleh.2016.04.003

4. Williamson AM, Feyer AM. Moderate sleep deprivation produces impairments in cognitive and motor performance equivalent to legally prescribed levels of alcohol intoxication. Occupational and Environmental Medicine. 2000;57(10):649-655. doi:10.1136/oem.57.10.649

5. Andrew Currin. NHTSA. NHTSA. Published September 8, 2016. https://www.nhtsa.gov/risky-driving/drowsy-driving

Advocacy Action Alert: Maintaining Access to Federal Research Funding

Monday, November 04, 2024

November 4, 2024

Advocacy Action Alert: Maintaining Access to Federal Research Funding

Advocacy is an important part of the RLS Foundation's work to increase awareness and promote RLS research. We ask RLS community members to participate in Advocacy Action Alerts to expand our reach within Congress. If you have any questions, please email adrianna@rls.org.

Action: Please contact your Senator and ask them to support the inclusion of "sleep disorders and restrictions" in the Fiscal Year 2025 Department of Defense Peer-Reviewed Medical Research Program (PRMRP).

Background: Each year, the United States Senate crafts an annual Department of Defense (DOD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). For a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. (You)

As a result of grassroots outreach, the Senate has recognized “sleep disorders” as a condition eligible for study annually. This support allows researchers to compete for $370 million in federal research funding each year.

Currently, the government is operating on a Continuing Appropriations Resolution (CR) until December 20th. Senators will be working until then on the FY 2025 DOD appropriations bill and will be deciding which conditions will be included on the next PRMRP eligible conditions list. The Senate Appropriations Defense Subcommittee released and approved an initial list that included “sleep disorders and restriction” earlier in the year. At this critical juncture, please reach out to the offices of your Senators and ask that they “support the inclusion of “sleep disorders and restrictions” in the DOD PRMRP’s eligible conditions list in FY 2025.”

Get Involved:

1. Find your Senator's contact information.

Email Matt Duquette (duquette@hmcw.org) of the Health and Medicine Counsel (HMC) and let him know that you would like to reach out to your Senator. Please include the following:

Include "RLS Foundation: PRMRP Action Alert" in the subject line.
Include your name and that you are part of the RLS Foundation community
Include the state you reside in
Copy RLS Foundation staff member, Adrianna Colucci, on your email as well, at adrianna@rls.org

We ask that you reach out to your Senators no later than December 13th.

2. Wait for an email from Matt Duquette, with your Senator's contact information

3. Email your Senator with the following message

Dear [Staffer Name],

My name is [Your Name] and I am a constituent and an advocate for the Restless Legs Syndrome community. I write you today on behalf of individuals affected by Restless Legs Syndrome (RLS) to thank you for ensuring that “sleep disorders and restriction” was included in the draft list of eligible conditions. We ask that you work with your colleagues to ensure that “sleep disorders and restriction” is once again listed as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) within the Committee Report accompanying the Senate’s FY 2025 Defense Appropriations Bill. Inclusion of sleep disorders allows researchers to compete for federal funding to improve RLS treatments and seek a cure.

[Please briefly share your personal story in 2-3 sentences.]

Thank you for your time and for your consideration of this request. I look forward to hearing from you in this regard.

Sincerely,

[Name]

[Address]

4. Send your email and wait for a response!

You may or may not receive a response from one of the staffer's from your Senator's office. Don't be discouraged if you do not see a reply!

Thank you for participating in RLS advocacy! Please email adrianna@rls.org if you have any questions.

RLS Foundation 2024 Research Grant Program Awardees

Sunday, November 03, 2024

November 3, 2024

RLS Foundation 2024 Research Grant Program Awardees

Each December, the RLS Foundation announces the opening of preapplications for research grant proposals through its Research Grant Program. Since its inception in 1997, this program has focused on supporting efforts to develop better treatments for RLS and ultimately find a cure. Researchers can apply for grant proposals of a 1 year-duration, with funding levels of up to $50,000.

This year marks a significant milestone: for the first time, the RLS Foundation is funding four RLS research studies in the same year! This historic level of support is made possible by our dedicated members and a collaboration with the American Academy of Sleep Medicine Foundation (AASMF), which co-funded one of the grant awards. Each project aims to deepen our understanding of the genetic, biochemical, and cellular mechanisms of RLS.

We are excited to introduce the innovative researchers leading these groundbreaking studies:

Shawn Hochman, PhD

Emory University School of Medicine, Atlanta, Georgia

RLS Foundation and AASMF Co-Funded Grant

Grant Title: Sensory dysfunction in a diet-induced iron-de¬ficiency mouse model of RLS: Characterization and control by dopamine-sensitive spinal gating circuitry

Objective: This study aims to use electrophysiological and genetic approaches in mice to study whether an iron-deficient diet leads to; (1) increased excitability in select ‘pain-like’ pe-ripheral sensory signals arising in calf muscles, (2) whose activa¬tion of central circuits is abnormally amplified due to deficient capacity for dopamine-sensitive inhibitory gating signals in the spinal cord. As an individual with RLS, I fully appreciate the suf¬fering associated with abnormal limb sensations and the imme¬diate relief provided by leg movements.

Imad Ghorayeb, MD, PhD

Hospital Center University De Bordeaux, France

Grant Title: Functional connectivity of the interoceptive network in RLS: An anatomo-clinical prospective study

Objective: This project will precisely characterize the intero¬ception awareness in RLS patients together with the time vari¬ance of the symptoms and their sleep/wake cycle impairment using ambulatory assessment. This assessment of the symp¬toms will be correlated to time-of-day intrinsic connectivity of the insula, based on both static and dynamic connectivity frameworks. Such a survey may confirm the hypothesis that interoceptive dysfunction in patients with RLS would link the sensorimotor and non-motor symptoms of the disorder into a common pathophysiological process.

Brian Koo, MD

Yale Center for Sleep Medicine, New Haven, Connecticut

Grant Title: Cerebrospinal Fluid Melanocortin and Endor¬phin in Restless Legs Syndrome Related Augmentation

Objective: This proposal aims to study melanocortin biology among RLS patients suffering dopamine agonist-induced augmentation and in the post-augmentation stabilized state, having been taken off the dopamine drug and treated with a non-dopamine medication. This proposal focuses on the neurobiological interaction between dopamine and MC biol¬ogy, first assessing cerebrospinal fluid MCs (α-MSH, β-MSH, β-EDP) in the chronic dopamine agonist setting, and then in the post-dopamine agonist setting.

Mauro Manconi, MD, PhD

Sleep and Epilepsy Center, Civic Hospital Neurocenter of Southern Switzerland

Grant Title: Epidural Spinal Cord Stimulation in Refractory or Augmented Restless Legs Syndrome

Objective: This research consists of a pilot interventional study with the general aim to test the efficacy and safety of epidural spinal cord stimulation (SCS) in patients with moderate to very severe RLS that is refractory, or intolerant to standard treatments. This is a proof-of-concept, open-label clinical trial.

Congratulations to the 2024 grant awardees! An in-depth review of each study will be published in the Fall edition of the RLS Foundation's quarterly magazine, NightWalkers. If you are not yet a member of the RLS Foundation and would like to receive a subscription to NightWalkers, visit our website at www.rls.org.

Restless Nights: Navigating RLS Amidst COVID Chaos

Saturday, October 26, 2024

October 22, 2024

Restless Nights: Navigating RLS Amidst COVID Chaos

By Marilyn Meier

Marilyn Meier has had RLS for many years. She is a mother of two, a grandmother of four, a world traveler and a birder who loves hosting her friends and family. She recently shared her experience of having RLS and COVID-19 with RLS Foundation staff. Though there is little research studying this correlation, she is sharing her story with other members of the community who may have had a similar experience.

I had “jumpy legs” starting in my 30s, but I did not have an official diagnosis of restless legs syndrome (RLS) until I was in my 50s. I had great faith in my family doctor, but quite frankly, very little was known at that time about RLS – even for specialists like neurologists. I took no medications to manage my symptoms for years until things progressed to the need for pramipexole (Mirapex). Mirapex certainly helped … initially. However, as my symptoms grew worse, my doctor increased the dosage. Once again, it helped. The bad news, however, was that I developed a side effect known as augmentation.* Concurrently, studies were being published connecting augmentation to Mirapex and other medications known as dopamine agonists.

I began seeing a neurologist who trained at Mayo Clinic and was familiar with RLS and augmentation. She prescribed gabapentin and slowly reduced the amount of Mirapex. When the augmentation persisted, she started me on oxycodone in addition to the other medications. This was life-changing! My symptoms improved significantly. Although I still experience breakthrough symptoms, for the most part my RLS is under control.

I have been fortunate that my severe RLS symptoms do not usually occur during the night when I am asleep. More often, they intensify in the afternoon (if I try to rest and start to doze off) and after 9:00 pm before I go to bed. When I experience these episodes, often daily, I call it an “attack.” The symptoms usually subside after about one or two hours. I walk, march in place, or go to the kitchen to find something to nibble on like grapes, cereal or peanuts – anything that might distract me from the maddening sensations in my legs! There have been rare occasions over the years when the attack has lasted as long as 30-plus hours without a wink of sleep. Does this sound familiar to any of you?

I was scheduled to have my right hip replaced this January – my ninth joint surgery. I mention this so that you understand that, by now, I know the drill and did not have any overriding anxiety about the surgery. However, I was experiencing some congestion the day before the surgery and, after consulting with the pre-op nurses at the hospital, I was advised to get a COVID test at my clinic. The lab technician told me that my results would probably not be reported until later that night, but in time for my scheduled surgery. I went to bed at 11:30 pm, fully expecting to get a good night’s sleep. But within half an hour, I was driven out of bed with my jumpy legs – I could not understand! This was not the normal pattern of my RLS. I headed downstairs so as not to disturb my husband, and that was the beginning of my endless night.

I desperately tried my usual coping strategies to disrupt the attack. I walked around, turned on the TV for distraction, marched behind my desk chair, moaned and groaned, but nothing helped. At 6:00 am, I looked again at my online patient portal and there it was – a positive COVID result! My COVID test meant no surgery – I was completely bummed! Not only did I have COVID, but I had suffered a severe attack of RLS. My legs were still going crazy, and they did not let up until 2:00 pm that afternoon, 14 hours after they kicked in. As you can imagine, I was exhausted and beyond frustrated. I questioned: Did COVID play a role in my RLS attack? After all, I rarely have such a severe attack, so it was a departure from any former pattern. I have no idea if COVID triggered my restless legs attack, and I will never know for sure if the two were connected.

Because I had COVID, my surgical team followed its protocol to wait six weeks after the diagnosis to reschedule surgery. In a few days, I will finally be getting my hip replacement. And am I ever ready!

Before closing, I would like to thank the RLS Foundation for the incredible work that they do. I became familiar with them during COVID and attended some of the online support group sessions. I read the NightWalkersmagazine from cover to cover, learning more and more about this disease. I have attended their fabulous webinars, which have enabled me to have more informed conversations with my neurologist. The information that these specialists provide is excellent. Thanks to the RLS Foundation, I can live more successfully with this disease!

*Medical Editor’s Note: Augmentation is a worsening of RLS symptoms after getting initial relief (often months or even years) from medication that treats RLS. These are typically dopamine related drugs (carbidopa/levodopa, pramipexole, ropinirole or rotigotine) but the non-dopamine drug, tramadol may also cause augmentation. Increasing the dose of the drug will provide temporary relief but with time, will worsen the augmentation process. For further information, see the RLS Foundation’s handout on RLS Augmentation.

Recognizing RLS Awareness Day on September 23

Monday, September 23, 2024

September 23, 2024

Recognizing RLS Awareness Day on September 23

RLS Awareness Day is recognized annually every September 23 – and this year, we are recognizing it all week!

Restless legs syndrome is a serious neurological disorder that affects 10 million adults and 1.5 million children. The lack of awareness surrounding this disease means that many face lengthy delays in receiving an RLS diagnosis, receiving adequate treatment or finding a community of support who understands the impact of RLS on daily life. Each day this week, we will have a new way you can raise awareness through one of five focuses: awareness, education, research, advocacy, and building a community of support.

We encourage members of the global RLS community to take part in recognizing this important day by following us on social media, sharing our posts, taking part in our Awareness Day activities, and lending your voice to help amplify the visibility of RLS throughout the medical and public spheres.

Throughout this week, take part in one or all of our special focuses on Facebook, Instagram, X.com and LinkedIn by engaging or sharing your own personal journey using the tag #MyRLSStory.

Monday, September 23

Raising Awareness

Share one thing you wish everyone knew about RLS by responding to our posts on Facebook or Instagram!

Tuesday, September 24

Education

Refresh your RLS knowledge by viewing a video from Dr. Lourdes DelRosso, a sleep physician and professor at UCSF, and RLS expert on the intricacies of RLS in pediatrics. Stay tuned on our socials to access the recording!

Wednesday, September 25

Research

The RLS Foundation Research Grant Program has funded 50 grants, totaling nearly $2 million, in its mission to fund research that helps us gain a better understanding of the disease, improve treatments, and ultimately, to find a cure.

This year, we are excited to announce the funding of four research grants – all of which uniquely drive forward our mission! Be sure to follow us on Facebook and Instagram, so you can share this exciting news with your family and friends.

Thursday, September 26

Advocacy

There are many forms of advocacy – self advocacy as a patient, advocating for the needs of your community through legislative action, advocating for a support system, and advocating for awareness in the medical community. Learn how the Foundation supports advocacy on our socials!

Friday, September 27

Community of Support

Comment a phrase or message of hope across the RLS Foundation’s social platforms and let your fellow RLS community members know that they are not alone and there are people who understand and empathize with their experiences.

Happy RLS Awareness Day!