Restless Legs Syndrome Foundation Blog

Make the Most of Your RLS Foundation Membership!

As an active RLS Foundation member, you have exclusive access to the member portal on www.rls.org. Here, you can explore over 30 publications, past editions of NightWalkers, and previously recorded webinars. Register for the member portal today to unlock these valuable resources and make the most of your membership!

If you have already registered for the member portal, you may need to reset your password, as it expires after one year of inactivity. Follow the steps below to register for the member portal or log in to your existing account!

Creating a Member Portal

If you have not registered for the member portal, follow the steps below. If you already have a username and password, skip to the next section.

1. Go to www.rls.org/login-member.
2. Click "New User Registration" in blue under the yellow "Login" button.
3. Enter your contact information.
4. Create a username. (You may use your email address as the username.)
5. Create a password and enter it once in the box and again in the second box to confirm. See password requirements below.
6. Click submit.

Password Requirements

1. The password must be at least 12 characters and must contain at least one number, one lowercase letter, one uppercase letter, and one special character ($, #, %, *, &, @, !).
2. The password cannot contain your name(s), username, "Password," or “RLS Foundation” in any text direction (e.g., drowssap is invalid).
3. The password cannot contain any indicator of time, date, or season in any text direction (e.g., My0rg1976).
4. The password cannot contain any of the above even with special character variations (e.g., spring, $pring, spr1ng, $unday, Sunday, Sund@y).

Please note that password requirements are determined by our website provider and cannot be modified by the RLS Foundation.

You will not have immediate access to the member portal upon registering. Please allow 24 business hours for your registration to be linked to your active membership.

Logging into the Member Portal

1. Go to www.rls.org/login-member.
2. Enter your username and password.
3. Click submit.
4. You now have access to the member portal! All resources can be found under the “Member Portal” tab. You will be logged out after one hour of inactivity.

If you have successfully logged in but are still unable to view the resources listed under the “Member Portal” tab, your membership may be expired. To view the status of your membership, select “Renew my membership” by hovering over the “Member Portal” tab. If your membership is inactive, click “Renew Now.”

All memberships are active through September 30 of the following year. You will not have immediate access upon renewing; please allow 24 business hours for your renewal to be linked to your account.

Resetting My Password

If you are unsure whether you have an existing member portal or need to reset your password, follow the steps below:

1. Go to www.rls.org/login-member.
2. Click "Forgotten Password" in blue under the yellow "Login" button.
3. Enter the email associated with your member portal.
4. Select and enter either "Username" or "First and Last Name."
5. Click submit to receive your username and a link to reset your password (check your Junk folder).
6. Click the reset password link in the email. Refer to the “Password Requirements” section above.
7. Once you reset your password, return to www.rls.org/login-member and enter your username and new password.
8. Click submit.

If you do not receive a password reset email, you may not have an existing member portal. In that case, follow the steps in the Creating a Member Portal section above.

Additional Support

If you have further questions regarding your membership status or portal registration, please email info@rls.org with the subject line: Assistance with Member Portal.

Call for RLS Research Grant Proposals

December 3, 2025

The RLS Foundation is a 501(c)(3) nonprofit corporation that aspires to achieve universal awareness of restless legs syndrome, to support the identification of effective treatments, and to find a cure for the millions of individuals 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 two proposals for the 2026 – 2027 grant cycle. The American Academy of Sleep Medicine has agreed to co-sponsor two grant awards for the 2026 round of funding.

Spring 2026 Priorities

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

• Iron homeostasis: - e.g. Elucidate the genetic/epigenetic, developmental and biological factors that contribute to RLS-relevant alterations in the central nervous system.
• Comorbidities: - e.g. Elucidate the interactions between RLS and comorbid disorders, such as cardiovascular disease and sleep apnea.
• Genetic/epigenetic: - e.g. Elucidate the interactions between RLS-relevant genetic/epigenetic factors or the consequence of these genetic/epigenetic factors on RLS-relevant neurobiological factors.
• 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

• The grant submission is a two-step process requiring both "pre-application” (letter of intent) due no later than January 23, 2026 and, if invited, a full application as indicated further below. Both pre-application and 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 submitting a joint proposal involving multiple PIs (Partnering PI Option): The Initiating PI must complete the preapplication submission process and submit the contact information for the partnering PI.
• 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 a preproposal with:

• Rationale (500-word limit): 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.
• Focus Area: Identify the research priority(ies) from the Spring 2026 Research Priorities list above that the proposed study seeks to address, if applicable.
• Specific Aims and Study Design (500-word limit): 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.
• Research Team (250-word limit): Provide a description of the research team that clearly demonstrates the appropriate background and experience to accomplish the proposed work.
• Impact and Relevance to RLS (250-word limit): Describe how the proposed work will impact healthcare and quality-of-life needs for patients and/or family members or beneficiaries living with RLS.

In addition, for the pre-proposal, applicants need to provide a reference list (one-page limit), a list of abbreviations, acronyms, and symbols, and biographical sketches (NIH format) of all key personnel. The pre-application and the supporting documents need to be converted into a single PDF file before uploading.

Formatting Requirements

For both pre- and full submissions, applicants need to abide for all documents by the NIH-based formatting requirements for grant applications:

• Paper size no larger than standard letter paper size (8 ½" x 11”).
• At least one-half inch margins (½”) — top, bottom, left and right — for all pages.
• No more than 6 lines per vertical inch.
• Font size at least 11 pt in fonts: Arial, Georgia, Helvetica, or Palatino Linotype.

To be considered, the LOI can be submitted online starting December 3, 2025 and must be submitted by January 23, 2026 (CT). See sample template for LOI here. Applicants will be informed in late February if their proposal is invited for a full application.

Full Application Submission Components:

If invited to submit a full application, the PI will receive the link to the full application and submission components.

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:

1. 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.
2. Use the terminology restless legs syndrome in all grant-related publications and correspondence.
3. For 1-year awards, agree to submit a progress report after 6 months and 12 months from the starting date of the grant.
4. 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.)
5. 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.

December 1, 2025

RLS Foundation Certifies Thomas Jefferson University Hospital as a QCC

As an RLS Quality Care Center, Thomas Jefferson University Hospital is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, August 15, 2025 – The Restless Legs Syndrome (RLS) Foundation announces it has certified Jefferson Sleep Disorders Center at Thomas Jefferson University Hospital (TJUH) as an RLS Quality Care Center.

An estimated 2%-3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on overall quality of life. As an RLS Quality Care Center, TJUH will serve as a destination for RLS patients who need expert medical care.

“We are honored to be designated as a Quality Care Center by the RLS Foundation,” says Zhikui Wei, MD, PhD, director of the Quality Care Center at TJUH. “This recognition reflects our commitment to providing comprehensive, evidence-based care for individuals with RLS. Our team has particular expertise in managing complex cases, including augmentation, iron deficiency associated with RLS and refractory RLS that do not respond to first-line therapies,” he adds.

TJUH joins a network of 15 other institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve the diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for healthcare providers who treat patients with RLS and regional support groups
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are pleased to welcome TJUH to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “Individuals with moderate to severe RLS face significant challenges in managing symptoms and finding experienced healthcare providers who are skilled in designing effective treatment plans. The goal of care at a QCC is to improve overall quality of life.”

Dzienkowski adds, “The RLS Quality Care Center network promotes access to healthcare providers with expertise in RLS management. We look forward to our partnership with TJUH to advance the quality of care for RLS patients.”

The contact information for USC is listed on the RLS Foundation website. Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University
• Massachusetts General
• University of Pittsburgh
• University of Virginia at Charlottesville
• Barrow Neurological Institute

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-centers.

About the RLS Foundation

The Restless Legs Syndrome Foundation is dedicated to improving the lives of all who live with restless legs syndrome (RLS). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and advance research to find a cure. The Foundation serves healthcare providers, researchers, over 6,000 members, and an estimated 12 million individuals in the United States who have the disease. The Foundation’s Research Grant Program has awarded over $2 million in funding for medical research on RLS causes and treatments. For more information, visit www.rls.org.

CONTACT
Adrianna Colucci
Communications and Marketing Coordinator
adrianna@rls.org
512-366-9109

RLS Discussion Board Moderator - Now Recruiting Volunteers!

Join the RLS Foundation volunteer network

The RLS Foundation is seeking volunteers to join our dedicated team of discussion board moderators! The RLS discussion board is a forum where individuals can post questions and discussion topics, connect with other individuals and provide virtual support: http://bb.rls.org/. If you enjoy online communication, offering encouraging and supportive messages to fellow community members and bringing awareness to RLS Foundation resources, this role might be a good fit for you! If you are interested in learning more about this volunteer position or the application process, please email elyse@rls.org. You can fill out the volunteer application by clicking here.

Responsibilities of discussion board moderators:

• Function as part of a team of moderators with shared responsibilities (currently, we have a team of four discussion board moderators).
• Monitor and respond to new threads to maintain active engagement and ensure all new posts receive a welcoming and supportive reply.
• Provide thoughtful, empathetic and supportive responses without providing medical advice.
• Process new discussion board registrations.
• Handle emails from individuals who may require assistance creating an account, logging in or finding their username and password.
• Regularly monitor the email provided to you by the RLS Foundation. This email will be posted publicly in NightWalkers and on the website.
• Respect and maintain the confidentiality of all users by keeping any personal information shared strictly within the forum.
• Understand and uphold Foundation policies on acceptable forum participants and appropriate content.
• Always remind participants that it is best to consult a qualified medical provider before making any changes to their RLS treatment plan.
• Promote RLS Foundation membership, resources and events.

Relevant Skills:

• Strong written communication skills. Use concise and supportive language.
• A deep understanding of RLS, its impact and challenges faced by those living with RLS.
• Familiarity with RLS Foundation resources and membership.
• Experience with technology, troubleshooting basic tech issues and operating the computer programs administrative control system (training provided).

Time Commitment:

We are looking for a long-term volunteer dedicated to helping the RLS community. This role typically requires 2-3 hours per week.

Benefits:

• Complimentary RLS Foundation membership during your time as a volunteer.
• Joining a network of RLS Foundation support volunteers.
• Annual training provided by the RLS Foundation.

If you are interested in learning more about this role, please email elyse@rls.org. You can access the volunteer application by clicking here.

The Night Sky Surrounds Me: My Journey with RLS

I watch the night sky. On clear nights, when Orion moves slowly from east to west, his archer belt pointing directly to Sirius, I feel myself moving with the Earth’s turning as I keep company with the moon, new to crescent to half to gibbous to full, cycling, ever cycling. Once in my nighttime wanderings, I saw an atmospheric river rushing directly over my head, exactly as if I were standing in a transparent bubble on a river bottom, looking upwards.

The night sky and keeping up with the weekly New Yorker were the best and the only good things about the four years I spent nightwalking during the COVID-19 pandemic. No matter how exhausted I was from lack of sleep, I had to keep moving.

Gabapentin, my RLS medication of 18 years, stopped working suddenly in December 2019. For two years, I saw three well-meaning but underinformed sleep physicians, who tried and failed to treat my refractory RLS. These doctors advertised themselves as experts in RLS; I believe they sincerely thought they were. They prescribed medications that had no effect, medications that worked for a few months and then augmented my symptoms beyond bearing, and medications that made me so sick I thought I was overdosing. My husband called 911 then – the result of one misguided prescription.

It's difficult to describe the despair that RLS evoked in me, because the disease robs me of both reason and creativity, of both hope and perspective. I was ashamed to tell even my close friends and family about my agony. When I tried, I saw the incomprehension in their eyes. After all, everyone knew someone with mild RLS symptoms. They could sleep. Why was it so hard on me? I didn’t know either.

I lived with this despair for the last two years of my RLS excursion to hell before I found the RLS Foundation in late 2023. I had no RLS medication during those terrible two years. I thought I was condemned, that nothing could help me. I was in a black hole, which swallowed up my ability to connect with my friends and family, scrubbed beauty out of every day, made my nights a torture chamber, and destroyed my ability to write.

I am a writer. Writing is my passion and my joy. When I retired in 2019 from the practice of law, I was free at last to devote myself full time to writing the plays and poetry that give my life expression and fully engage every part of my brain and body. Writing connects me with the world around me – the trees, the air, the soil, the Earth’s creatures. My life lost meaning a few months after I retired, in the years before I found the RLS Foundation. Does that sound overly dramatic? I assure you; it is not. The disease consumed me, body and mind and soul. My joy and my creativity died.

Scrolling for any information that could help, one day in August 2023, I found the RLS Foundation website. I called. Staffer Adrianna Colucci immediately sent me a packet of information – brochures, back issues of NightWalkers magazine, reports of RLS studies, and a list of RLS Quality Care Centers. The nearest expert was a thousand miles away, in southern California. I called Dr. Mark Buchfuhrer’s office at once and made an appointment to see him – a pulmonologist and sleep specialist with extensive RLS management experience and a leading RLS researcher – in September.

Then I had second thoughts. I couldn't bear the thought of sitting in a car on the way to an airport, getting through a security line, sitting for three hours on the plane, and sitting in a car to get to his office. I couldn’t sit still for more than an hour. And what if the visit was useless? So, I canceled the appointment. I made another appointment for November. I canceled that appointment, too. Finally, I made an appointment and kept it in March 2024.

March 2024 saw the worst flooding in a century in Los Angeles. The Los Angeles River raged far over its banks, fed by torrents of rain and whipped by wind. On the train platform at the airport, people dressed for spring wrapped their arms around themselves and cowered. At the hotel, there was no central heat; my husband and I huddled together over a space heater throughout our stay. We walked the half-mile to the doctor’s office the next morning along a street as wide and busy as a highway, as I castigated myself for coming to southern California and dragging my husband along.

When Dr. Buchfuhrer walked into the examination room, I was stiff with armor against inevitable disappointment. Why should this be different from my past experiences? Slowly, as he asked me about my long history with the disease, I saw that this time, this doctor would be different. It was the way he spent at least half an hour on my history, asking questions, that gave me new insight into my own journey. He wasn’t fidgety or bored. He seemed genuinely interested in me as a patient. It was when he said, “I know I can help you,” that I began to let my armor go. No other doctor had ever said that.

Dr. Buchfuhrer worked closely with me over the course of the year, tweaking the medication that has given me sleep again. Within three months of my first visit to his office, I slept three or four hours at a time. Within six months, I was sleeping through the night on most nights, with few daytime RLS episodes. In July 2024, Dr. Buchfuhrer enrolled me in an RLS research study for the new Nidra leg bands, a nonpharmacological device that uses tonic motor activation to alleviate RLS symptoms quickly, before they take over the body and mind. I didn’t need to use the bands until the beginning of this year, when, inexplicably, my symptoms began to recur every two to three hours during the night and sometimes during the day.

I didn’t want to increase the dosage of my medications, since I’m already somewhat drowsy and unsteady in the evenings under their influence. Now I use the bands most nights once and sometimes twice or three times a night. But instead of staying up for an hour, walking until the symptoms subside and I can sleep, I now get up, turn on the bands, and get back in bed within 10 minutes.

It's been expensive, tiring and time-consuming to travel to California for doctor visits and the Nidra band fitting, but what is it worth to have your life back? Dr. Buchfuhrer listens carefully to me and takes what I say seriously. I am the best source of information about my experience of the disease, and he honors that. He carefully calibrates my medication and dosing regimen and isn’t put out when it doesn’t work as well as he wants it to. I no longer blame myself for the disease.

RLS is a chronic condition. I know I’m not going to be cured, but now I am sleeping. I have my brain back. My doctor’s attention to and belief in me, the carefully calibrated medication, and the Nidra bands brought me back to life. I’m writing. I travel again. I connect with friends and family. I’m walking in the woods. I no longer blame myself. I am at peace.

Submit A Design for Our Spring Fundraiser!

Are you an artist, photographer, graphic designer or simply artistic? Submit your original artwork or photography to be considered for use in the RLS Foundation's Spring Fundraiser campaign!

As part of our RLS Awareness Day activities for September, we are asking RLS community members to submit a design to be used in our Spring Fundraiser campaign. Selected artwork will be featured on the greeting cards mailed to RLS Foundation members during our annual spring fundraiser. This design contest is an opportunity to showcase your skills and get involved in supporting a meaningful cause. All designs should be emailed to elyse@rls.org with the subject line: RLS Foundation Spring Fundraiser Artwork

Submission Details:
Deadline: October 10
File formats accepted: PDF, PNG, or JPEG
Card dimensions: 5” x 7”

Design Guidelines:
The RLS Foundation’s mission emphasizes hope as we push for continued research to improve treatments and a cure. Artwork should reflect this message, shining light on the progress that has been made while letting others know that they are not alone in their RLS journey. In the past, the spring fundraising cards have used images of sunsets, flowers or fields through various mediums (watercolor, photography etc).

• There are no required color schemes.
• Designs must be non-partisan and appropriate for all ages.
• Both artwork and photography are accepted, with a certification that the work is original and created wholly by the submitting artist, and that artificial intelligence was not used to create the artwork in whole or in part.
• The card featuring the design will also contain fundraising and other messages inside the card, but text will not be superimposed on the image.

Artist Acknowledgement:
A brief credit and biographical note about the artist is included on the back of the card. Selected artists will be asked to provide a short paragaph (30 words or fewer) about themselves and their artistry.

• The selected artist will receive a complimentary set of printed cards and envelopes featuring their design.
• Artist will be recognized on our website and in Foundation communications.

Rights and Usage:
By submitting, artists grant the RLS Foundation the right (not subject to royalty, licensing fees or other compensation) to reproduce, distribute and sell printed materials featuring the selected designs as part of our fundraising campaigns. Artists retain copyright and may use their work elsewhere. Artists will be asked to sign a model release agreeing to these terms.

Please email elyse@rls.org with any further questions.

August 15, 2025

RLS Foundation Certifies University of Southern California as a QCC

As an RLS Quality Care Center, the University of Southern California is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, August 15, 2025 – The Restless Legs Syndrome (RLS) Foundation announces it has certified the University of Southern California (USC) as an RLS Quality Care Center.

An estimated 2%-3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on overall quality of life. As an RLS Quality Care Center, USC will serve as a destination for RLS patients who need expert medical care.

“We are honored to receive designation as a Quality Care Center,” says Tammy Wong, MD, interim medical director of the Quality Care Center at USC. “As an RLS Quality Care Center, we aim to enhance our patients' quality of life by controlling RLS symptoms, improving sleep quality and providing RLS education to patients, families and the community,” says Dr. Denise Sharon, clinical assistant professor at USC and RLS Foundation Scientific and Medical Advisory Board member who has been caring for RLS patients for over 25 years.

USC joins a network of 14 other institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve the diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for healthcare providers who treat patients with RLS and regional support groups
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are pleased to welcome USC to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “People with moderate to severe RLS face significant challenges in symptom management. Access to highly skilled and experienced healthcare providers is essential to effective treatment and improvement in quality of life.”

Dzienkowski adds, “The goal of the Quality Care Center network is to provide RLS patients access to healthcare providers with expertise in RLS management. We look forward to partnership with USC to advance the quality of care for RLS patients.”

The contact information for USC is listed on the RLS Foundation website. Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University
• Massachusetts General
• University of Pittsburgh
• University of Virginia at Charlottesville
• Barrow Neurological Institute

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-centers.

About the RLS Foundation

The Restless Legs Syndrome Foundation is dedicated to improving the lives of all who live with restless legs syndrome (RLS). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and advance research to find a cure. The Foundation serves healthcare providers, researchers, over 6,000 members, and an estimated 12 million individuals in the United States who have the disease. The Foundation’s Research Grant Program has awarded over $2 million in funding for medical research on RLS causes and treatments. For more information, visit www.rls.org.

CONTACT
Adrianna Colucci
Communications and Marketing Coordinator
adrianna@rls.org
512-366-9109

August 15, 2025

RLS Foundation Certifies Barrow Neurological Institute as a QCC

As an RLS Quality Care Center, Barrow Neurological Institute is certified to provide expert care to patients with restless legs syndrome, a chronic neurological sleep disorder.

AUSTIN, TEXAS, August 15, 2025 – The Restless Legs Syndrome (RLS) Foundation announces it has certified Barrow Neurological Institute as an RLS Quality Care Center.

An estimated 2%-3% of adults need daily clinical treatment for RLS, a chronic neurological disease that disrupts sleep and can have a devastating impact on overall quality of life. As an RLS Quality Care Center, Barrow will serve as a destination for RLS patients who need expert medical care.

“We are proud to be recognized with this esteemed designation,” says Nicki Niemann, MD, director of the Quality Care Center at Barrow. “We’re honored to be recognized as an RLS Quality Care Center and excited to bring national attention to the critical needs of this patient population. By uniting Barrow’s expertise in sleep medicine and movement disorders, we’re uniquely positioned to provide innovative, patient-centered care for even the most complex RLS cases. Through this partnership with the RLS Foundation, we hope to advance clinical standards, expand access to expert care in the Southwest and inspire a new level of understanding for a condition that is too often overlooked,” says Dr. Neimann.

Barrow joins a network of 14 other institutions in the US and Europe that are certified by the RLS Foundation as Quality Care Centers. Through this program, the Foundation aims to improve the diagnosis and treatment of the disease worldwide.

RLS Quality Care Centers:

• Provide expert care to RLS patients
• Serve as information and referral resources for healthcare providers who treat patients with RLS and regional support groups
• Support patients and families through educational offerings and literature
• Share information with other centers to improve clinical best practices
• Partner with the RLS Foundation on quality improvement projects to raise the standard of care for RLS patients everywhere

“We are delighted to welcome Barrow to the RLS Foundation Quality Care Center network,” says RLS Foundation Executive Director Karla Dzienkowski. “Individuals with RLS in the Southwestern part of the United States face significant challenges in finding healthcare providers who can manage moderate to severe forms of RLS. Barrow Neurological Institute provides access to knowledgeable and skilled healthcare providers who can provide personalized treatment plans to improve quality of life for those living with RLS.”

Dzienkowski adds, “The goal of the Quality Care Center network is to provide RLS patients access to healthcare providers proficient in RLS management. We look forward to our partnership with Barrow Neurological Institute to provide treatment access, management and quality of life improvement for RLS patients.”

Contact information for Barrow Neurological Institute is listed on the RLS Foundation website. Other certified RLS Quality Care Centers are:

• Johns Hopkins Center for Restless Legs Syndrome
• Mayo Clinic Center for Sleep Medicine
• Houston Methodist Neurological Institute
• Stanford Sleep Medicine Center
• Emory Sleep Center
• Yale Center for Restless Legs Syndrome
• Vanderbilt University Medical Center
• Scripps Clinic Viterbi Family Sleep Center
• Neurocenter of Southern Switzerland
• Innsbruck Medical University
• Massachusetts General
• University of Pittsburgh
• University of Virginia at Charlottesville
• University of Southern California

To learn more about the RLS Quality Care Center Program, visit www.rls.org/quality-care-centers.

About the RLS Foundation

The Restless Legs Syndrome Foundation is dedicated to improving the lives of all who live with restless legs syndrome (RLS). Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments and advance research to find a cure. The Foundation serves healthcare providers, researchers, over 6,000 members, and an estimated 12 million individuals in the United States who have the disease. The Foundation’s Research Grant Program has awarded over $2 million in funding for medical research on RLS causes and treatments. For more information, visit www.rls.org.

CONTACT
Adrianna Colucci
Communications and Marketing Coordinator
adrianna@rls.org
512-366-9109

Clinical Insights Into Observational Studies

By Dr. William Ondo, Director of the RLS Quality Care Center at Houston Methodist Neurological Institute

Medical epidemiological studies, also called observational studies, assess information from existing data sources. These studies often make news headlines, reporting “associations” between some factor (e.g., medicine, food, activity) and some outcome (typically a feared medical condition). No epidemiology/observational study can ever deduce that one factor “caused” the other, a distinction that is often blurred by media sources. A classic example: there is an extremely high association between ice cream consumption and deaths by drowning. However, it is unlikely that ice cream consumption causes death by drowning and unlikely that death by drowning causes more ice cream consumption. It is much more likely that both occur more in summer, which explains the association. Although a useful, fast, and inexpensive mode of study has heralded many medical advances, in isolation, retrospective epidemiology studies are among the least scientific and potentially misleading forms of analysis.

One recent observational study correlated the use of gabapentin with developing dementia.¹ This study incorporated many of the statistical strategies used to improve the accuracy of observational studies. However, even the most strenuous and well-meaning analysis can’t overcome the potential for bias in any retrospective (analyzing previously collected data) study. This specific study compared 26,416 patients who used gabapentin for low back pain against 1,103,678 patients who did not take gabapentin for low back pain. All diagnoses were based on recorded standardized electrical diagnosis codes. The researchers from this study then used a complex process to make the larger non-gabapentin group more similar to the gabapentin group by specifically selecting a subset of 26,000 individuals from the non-gabapentin group to use in the direct comparison. By doing this, the researchers can “correct” for some intrinsic differences to make the comparison relatively more fair. Patients with other established risk factors for dementia that might bias the group (independent of gabapentin use) were excluded. At the end of this correction, the two groups were similar for age, sex, race, hypertension, diabetes, heart disease and some other disorders that have been associated with developing dementia, based on electronic medical record data.¹

However, researchers can’t correct for every factor. Fortunately, the authors of this study included the baseline characteristics of the 26,000 gabapentin group vs. the 1.1 million non-gabapentin group. Overall, the gabapentin group was much “sicker,” older, and had many additional factors that would otherwise increase their risk for dementia. Although the researchers corrected for some of these, they could not correct for many other potential dementia risk factors, such as hearing loss, social isolation, obesity, physical activity/exercise, and general attitudes toward health/healthy lifestyles. The published results do not allow us to determine whether the gabapentin group had more of the unmeasured dementia risk factors. However, because they had higher risks across almost every other reported baseline characteristic, it is reasonable to infer that they likely had more of these unmeasured risk factors as well. It was also indicated that the gabapentin baseline group were prescribed a greater number of opioids and other pain treatments. Based on this information, the gabapentin baseline group likely had more severe pain issues, which would at least suggest less exercise and more social isolation.

Potentially the biggest uncorrected risk factor for these types of observational studies is the frequency of health care visits. The more a person seeks medical assistance, the more likely they are to receive treatment and obtain a diagnosis for medical conditions. No individual who has not seen a physician is diagnosed with dementia and patients who visit a physician less often are also less likely to receive a subsequent diagnosis of dementia. This is a major, although underrecognized, intrinsic bias with all observational studies.

Other issues that may account for bias include the accuracy of the medical records, since no patient was interviewed or completed any type of questionnaire for this study. Further, generalizations to one disease (back pain) cannot always be attributed to another (RLS). For example, alpha-2-delta ligand medications (gabapentin, gabapentin enacarbil and pregabalin) improve sleep in RLS, which is known to lessen dementia risk in general. Specifically, they increase deep (delta) sleep, which is also hypothesized to reduce dementia.

Unfortunately, proper scientific studies to prove causality require prospective (collecting data moving forward in time) trials, which are lengthy, expensive and very challenging. With respect to this study, proving an association between gabapentin and dementia would require randomizing thousands of similar people to take either gabapentin or a placebo, with no chance of taking similar medicines. Participants are followed regularly for 10-15 years, examining how many in each group develop dementia. That idealized version of the study is essentially impossible on practical, financial and ethical grounds. There are high quality, but short (12-48 week) randomized prospective trials demonstrating the benefit of gabapentin enacarbil and pregabalin for RLS, however these can’t definitively eliminate the possibility of side effects that occur only after many years. Interestingly, there have been only a few small studies of gabapentin for RLS, but because of its low cost, long-established safety profile, and similarity to gabapentin enacarbil and pregabalin, it is commonly used.

At this point, I do not feel this association study of gabapentin with dementia should deter people from using gabapentin for RLS. We consider this medicine to be among the safest overall options for RLS.

1. Eghrari NB, Yazji IH, Yavari B, Van Acker GM, Kim CH. Risk of dementia following gabapentin prescription in chronic low back pain patients. Reg Anesth Pain Med. Published online July 10, 2025. doi:10.1136/rapm-2025-106577

RLS Foundation and American Academy of Sleep Medicine Foundation Announce 2025 Research Grant Awardees

August 4, 2025

Join the RLS Foundation Board of Directors

Shape the future of RLS advocacy and research

The RLS Foundation is seeking passionate, committed individuals to join our Board of Directors. Board members have the unique opportunity to guide the strategic direction of the Foundation, support its mission and directly contribute to improving the lives of individuals living with RLS.

Board members play an essential role in governance, advocacy, fundraising and outreach. The Foundation relies on its board to provide thoughtful leadership, expand our outreach and ensure we remain a trusted voice for the patient and medical community. We welcome applicants who bring clinical expertise, lived experience with RLS, nonprofit leadership, or who have a background in business, law, finance or communications. Many of our Board members have been diagnosed with RLS or are RLS physicians, however this is not a requirement.

Board service is both a responsibility and a privilege. In addition to participating in board meetings (virtual and in-person), members are expected to serve on at least one committee and actively support the Foundation’s programs and goals. This includes contributing time and resources and acting as an ambassador for the Foundation within your professional and personal networks.

Serving on the RLS Foundation board is a meaningful way to give back and to join a dedicated team working to advance understanding, improve care, and ultimately find a cure for RLS. If you are interested in learning more about board membership, please contact info@rls.org for more information.

2025 Hill Day FAQ

The RLS Foundation is hosting its annual Hill Day event on Monday, October 6. Hill Day is an opportunity to unite with fellow RLS community members to meet with legislative staffers and advocate for key issues. This is an all day in-person event, coordinated with the Health and Medicine Counsel of DC (HMC), an organization that guides the Foundation's advocacy efforts. We'd love to have you join us on Capitol Hill! Read through the FAQ below, or please email adrianna@rls.org with additional questions or concerns.

Agenda: Monday, October 6, 2025*

8:00 AM: Welcome Session at Health and Medicine Counsel: 50 F St NW, Suite 730, Washington, DC

8:45 AM: Walk to US Capitol Hill for group photo

9:15 AM: Walk to Russell Senate Office Building: 2 Constitution Ave NE, Washington, DC

9:30 – 12:00 PM: Senate Meetings

12:00 - 1:00 PM: Lunch in Senate Building Basement Cafeteria

1:00 PM: Walk to Rayburn House Office Building: 45 Independence Ave SW, Washington, DC

1:30 - 4:00 PM: House Meetings

4:00 PM: Debrief

*This schedule is tentative and may change based on office availability.

Preparation

What are we advocating for?

Put simply, we are advocating for increased funding for RLS research, enhanced awareness and education, and protected access to crucial therapies for refractory RLS which may include opioids. See the legislative agenda for details.

What should I bring with me?

A valid ID is required to enter all government buildings. Bring any notes you have prepared to share with legislators. You can take a small bag with your wallet, ID, camera, portable phone charger, or other personal effects. Water and unopened snacks are permitted inside the building. Prohibited items include perfumes, pepper spray, aerosol containers, weapons, backpacks, and suitcases as you will have to go through security.

What is the dress code?

Business casual attire is appropriate. Wear comfortable shoes as you will be walking/standing for most of the day.

The Restless Legs Syndrome Foundation is a nonpartisan organization. We are fortunate to have strong working relationships with both sides of the aisle that has resulted in continued advocacy success for our community. To maintain a nonpartisan and professional environment during our hill day, please refrain from wearing clothing or accessories with political slogans or affiliations.

What is the Health and Medicine Counsel (HMC)?

The Health and Medicine Counsel of Washington is a government relations organization that works with nonprofit organizations and companies in the healthcare industry. HMC guides our advocacy efforts, including coordinating congressional meetings.

Will I receive training prior to meeting with representatives?

There are advocacy materials available on our website under the “Advocacy” Tab. On Monday morning there will be a welcome session with HMC representatives who will prepare you for the day.

How can I prepare for Hill Day?

Step 1: Register at: www.rls.org/hillday. Registering in advance allows our HMC representatives to target legislators in your state and district.

Step 2: Create your story. Meetings with representatives will be brief, so preparation is key. Representatives want to hear why the policies they pass impact their constituents.

Step 3: View our advocacy resources under the “Advocacy” Tab at www.rls.org.

Step 4: Plan your travel including hotel reservations, car rentals, public transportation, or other necessary details.

What To Expect

This is my first time participating in any type of advocacy work- what should I expect?

Advocacy can seem daunting, but it will not take you long to gain confidence! You will feel a sense of unity among the members of your group knowing you have a collective mission and a sense of empowerment by being a voice for those who cannot be there.

The HMC will coordinate meetings in advance, but you will receive your schedule the day of. You will likely meet with 5-7 offices. An HMC representative will guide your group through the meetings.

Your group may include an RLSF employee, a Board member, an RLS expert, other RLS members and an HMC representative.

Who do we meet with?

You will meet with legislative staffers who are responsible for listening, asking questions and taking notes during the meeting. Legislative staffers are essential in helping legislators make informed decisions and effectively serving constituents.

How is each meeting structured?

You will meet with a representative from each office who is there to listen and take notes. These meetings last about 15-20 minutes. Do not be surprised if your meetings take place in a conference room, the office lobby, or even the hallway!

After introductions, an RLSF representative will explain what RLS is and what the RLS Foundation does. You will then share your story in 2-4 minutes. The HMC representative will end with our legislative priorities and request their support. The flow of your meeting will happen naturally, as your group learns how to bounce off each other’s statements.

What is my role in this meeting?

Statistics and numbers only go so far- the most impactful statements come from those who live with RLS and can provide context for the adversities faced by the community. Prepare your story in advance, as you will have 2-4 minutes to share.

How much walking is required?

Please note that congressional buildings are quite large and navigating them will involve a significant amount of walking. Based on past events, on average you will be walking six miles in total. We recommend wearing comfortable shoes and being prepared for an active day. If you have any walking impairments or mobility concerns, we recommend planning ahead to ensure a comfortable experience.

Travel

Where do we meet?

We will meet at the HMC Headquarters located at 50 F St NW, Suite 730 Washington, DC 20001.

I am commuting by car. Where can I park?

The closest parking structure is Market Square Parking Garage located at 701/801 Pennsylvania Avenue NW. It is about a 20-minute walk to the meeting area. You can reserve parking tickets in advance.

Can I commute by train?

Yes, the HMC office is just a short walk from Union Station.

What hotels are in the area?

There are many hotels in the area, both within walking distance and driving distance of HMC Headquarters.

Options within walking distance:

- Phoenix Park Hotel: 520 N Capitol St. (2 min walk)

- Hilton Washington DC Capitol Hill: 525 New Jersey Ave NW (3 min walk)

- Kimpton George Hotel: 15 E St. NW (3 min walk)

Options within driving distance:

- Hilton Garden Inn: 2020 Richmond Highway Arlington (12 min drive)

- Lyle Hotel: 1731 New Hampshire Ave NW (15 min drive)

- Cambria Hotel Capitol Riverfront: 69 Q St SW (10 min drive)

- State Plaza Hotel: 2117 E St NW (15 min drive)

- Hilton Washington DC National Mall The Wharf: 480 L'Enfant Plaza SW (10 min drive)

You may need to consider car rentals or ride-sharing services as a form of transportation. Be sure to reserve all accommodations in advance!

Welcoming the RLS Foundation's New Board Chair

The RLS Foundation is pleased to announce that Jeffrey Durmer, MD, PhD, has been elected chair of the Foundation’s Board of Directors. Dr. Durmer joined the Board in 2019 after serving nearly 10 years on the RLS Foundation Scientific and Medical Advisory Board. He is a systems neuroscientist, neurologist and sleep medicine physician with expertise in technology-enabled sleep-health delivery systems. He is the chief medical officer of Absolute Rest, where he oversees the development of innovative technology-enabled precision medical and behavioral programs designed to enhance human health, longevity and performance. He is also the telemedicine principal investigator for the Sleep SMART clinical trial, the largest sleep apnea and stroke study funded by the National Institutes of Health (NIH). His past research spans from uncovering the neuroanatomical and neurophysiological substrates of subcortical visual systems involved in blind sight, to developing the first standardized clinical interview tool for pediatric restless legs syndrome.

Q: Thank you for giving us the opportunity to introduce you as the Board Chair of the RLS Foundation! How did you become involved with the Foundation?

I first became involved with the RLS Foundation as a researcher at Emory University. At the time, I was directing the Emory Pediatric Center and the adult sleep laboratory, working to identify various RLS phenotypes with Emory’s Clinical Research in Neurology (CRIN) Program and collaborating with the Decode Project in Iceland.

I was working with Dr. David Rye and Dr. Don Bliwise, who introduced me to the RLS Foundation’s Research Grant Program, which has funded over $2 million in research to date. I thought it could be a great opportunity to fund research characterizing the phenotypes of children with RLS and further understand the relationship between RLS and ADHD. I submitted an application and became an RLS Foundation Research Grant recipient in 2005. During that period, I had a research poster featured at the annual American Academy of Sleep Medicine meeting, where I met Karla Dzienkowski, who is now the RLS Foundation executive director. Karla’s interest in pediatric RLS research led to multiple discussions, and she persuaded me to join the Foundation’s Scientific Medical Advisory Board (SMAB). I worked on the SMAB for eight years, helping support the Foundation’s work in pediatrics.

Q: In October 2024, you became the new Board chair. What are some of your responsibilities in this role?

The RLS Foundation is a dynamic and fluid organization, responsive to the needs of people with RLS. We are an advocacy organization, first and foremost, which includes funding pilot projects to advance research into multiple aspects of RLS, providing education and support programs for patients and families, representing the interests of patients, researchers and clinicians, and helping governmental agencies from the NIH to Congress understand the importance of addressing this very common condition and its associated medical comorbidities. As chair, my role is to create clarity and ensure our actions are reflective of our values and mission. My goals for the Foundation are to help it embrace technological and organizational innovation to grow our audiences, refine our financial efficiencies, and improve connectivity between RLS researchers, clinicians, patients and their families.

As someone with extensive experience managing businesses, clinical laboratories and healthcare operations, I look forward to guiding the Board toward a sustainable structure that supports continued growth throughout and after my term.

Q: Do you believe that your previous work on the SMAB complemented your role on the Board?

Absolutely. In addition to understanding the work of the Board of Directors, I understand the pressures the researchers and clinicians on our SMAB face – both in their practice and on behalf of the organization. I believe there needs to be a transparent and dynamic relationship between the SMAB and Board of Directors to foster collaboration and sustained proactive organizational growth in the future.

I also want to identify how the Board can assist Karla and the Foundation in their work with the SMAB. The more proactive we become, the less reactive we will need to be within the Foundation when issues arise.

Q: What led to a specific interest in RLS?

I was recruited from the University of Pennsylvania to the Department of Neurology at Emory University. My previous work focused on the consequences of sleep deprivation, the individual variability of the impact of sleep disorders on health and function, and the neuroanatomical structures involved in normal and pathological sleep.

When I got to Emory, I found that the team was more focused on movement disorders, so I made a decision to learn more about the basic science and the animal modeling associated with RLS. I found a clinical “missing link” within pediatric RLS. While there were publications and some research being conducted, there was no standardized way to diagnose and treat RLS in pediatric populations. I decided to switch my focus from cognition and the neurocognitive consequences of sleep deprivation and performance to RLS in children.

Q. What is your advice for those struggling with RLS?

Know that you are not alone. Your symptoms are shared by millions of other people. By joining the RLS Foundation, you will find a community of people going through similar experiences who can provide hope.

Membership to the Foundation not only connects you with a support network, but also keeps you informed on the latest RLS research and news. As we know, being part of a community promotes mental and physical health, and when that community is focused not only on connectivity but also creating solutions to a major health issue, it serves you, your family and the rest of humankind.

The full interview with Dr. Durmer is available in the Winter 2025 edition of NightWalkers, our quarterly magazine. You can access the complete article by logging into the member portal of the RLS Foundation website. If you are not yet a member, we invite you to become one today by visiting www.rls.org/joinnow.

Welcoming The RLS Foundation's Newest Team Member!

Elyse Hopfe is a recent graduate of the University of Texas at Austin, where she earned her degree from the Stan Richards School of Advertising & Public Relations. During her academic years, Elyse developed a strong foundation in strategic communication, public engagement and community outreach. She has extensive experience facilitating both group and individual peer support meetings, with a strong emphasis on mental health and wellness. Elyse joined the RLS Foundation as Program Manager in May, where she will oversee several key initiatives, including the Foundation’s volunteer support network, social media, webinar series and other outreach programs aimed at supporting individuals affected by RLS. Her passion for advocacy and communication will be instrumental in expanding the Foundation’s reach and strengthening its connection to the RLS community.

How were you introduced to the RLS Foundation and what sparked your interest in pursuing a position here?

I was introduced to the RLS Foundation through a job listing that one of my UT professors sent me. I applied as quickly as I could when I found out that I could make a difference for RLS patients using health communication. I know by experience the difficulty of living with a chronic condition, and I know that feeling less alone is a tether of support that I want to always provide people with. Once I met and shared stories with the kind and passionate RLSF staff, I knew that the position was meant for me.

Based on what you’ve learned about RLS at this point, why do you feel it is important to increase awareness of the disease?

I am still discovering more and more about RLS every day, but I know that increasing awareness is essential because of how much life-changing progress is yet to be made. By hearing the stories of RLS sufferers and watching doctors recount their extensive research and experience in treating RLS patients, I learned the absolute necessity of making things better for those with RLS, which starts with making the rest of the world listen. The RLS Foundation has such an impactful history surrounding its growing community, and increasing awareness about the disease will lead to more discoveries and discussions for everyone who becomes involved.

What influenced your passion for mental health and wellness advocacy? What practices or philosophies do you want to integrate into the support meetings hosted by the Foundation?

My passion for mental health and wellness advocacy derives originally from my own battle with mental health, but it has since evolved after my collective volunteer experience leading both group and individual support. Having a therapist can be amazing, but there is a differently beautiful and powerful connection to be gained from supporting and receiving support from fellow community members who have shared your experiences in a non-clinical environment. Talking circles are an ancient practice from Indigenous cultures, including those in Canada and in the US, and I want the restorative effects of support groups to be recognized as a gift from that learned practice. As the manager of the volunteer support program at the Foundation, I want all of our support spaces to be nonhierarchical, to feel safe for leaders and attendees, and to be inclusive for anyone seeking support for their lived experiences with RLS.

What aspects of the RLS Foundation’s mission resonate most with you?

I really resonate with the action-oriented idea behind our mission. The Foundation is not passively existing to host the connections within the RLS community, but it is alive and working to make change for people who have the disease through advocacy, research, and overall education and awareness. I want to be the change, not just someone witnessing it.

What are you most excited about in your new role as program manager?

I am most excited to get to know you: whoever is reading this. I am very willing to learn more personal stories about what living with RLS can be like and I want to be extra informed when I get to contribute to exciting things like our monthly webinars, social media, and chats with support group leaders, too.

What would you like volunteers and community members to know about you as you get started?

I want everyone to know that while I do not experience RLS myself, I am devoted to amplifying the voices of the people that do. I will surely make mistakes as I acclimate to my role at the Foundation but rest assured, I am open to reframing how I navigate the complexities involved with providing the best experience for all volunteers and community members at RLSF. Please reach out to me at elyse@rls.org if you want specific resources or if you feel inclined to get to know me a bit better. I am very grateful to be part of this very personal mission.

Outside of work, how do you like to spend your time?

I absolutely love the Texas heat, and I very often swim or walk outdoors. I am an avid reader, thrifter, and video editor when I’m not spending time with my friends. My nightly routine often includes cooking something nostalgic with my television playing in the living room. Recently, I’ve been teaching myself how to play bass guitar, but I’ve never played for an audience!

Do you have a favorite quote or motto that inspires your work?

A motto that I have internalized from yoga class is “kind mind, kind body, kind spirit.” Whenever I feel lost, or purposeless, or not good enough, I remind myself that acting through kindness will result in work that is honest and true.

Advocacy Action Alert: Sign-On Letter for the Sleep Community

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.

Background: Congresswoman Zoe Lofgren (D-CA) is leading the annual appropriations sign-on letter for Fiscal Year (FY) 2026, calling for enhanced support for sleep health and medical research activities. The letter encourages further coordination and new initiatives across the Department of Health and Human Services so that ongoing breakthroughs in medical research are connected with earlier diagnosis, better patient care, and enhanced professional education and public awareness.

Why It’s Important: This letter is open for congressional House members. Increased support from House representatives improves the likelihood that sleep-related recommendations will be incorporated into the final appropriations legislation. Your member of Congress will only sign on to the letter if they are asked to do so by you, their constituent.

Request: Please contact the office of your House Representative and ask that they continue to support the sleep, circadian, and sleep disorders medical research and public health priorities by joining the community’s annual appropriations letter.

Steps to Take Action:

*Complete Step 1 as soon as possible, as you will need the contact information before completing the rest

1. Contact our Washington representative, Matt Duquette at duquette@hmcw.org. Matt will provide the contact information of the Health Legislative Assistant in your Representative’s DC office. Provide your home address and zip code so Matt can identify your House Representative’s Health LA.

Email Subject Line: Congressional Sign-On Letter - RLSF

*Please cc: Adrianna Colucci, RLS Foundation Communications Coordinator (adrianna@rls.org)

3. Email the Health Legislative Assistant, when you receive their contact information, using the sample message below. Please copy and paste the message below into an email, as the representatives will need the link to sign-on. Attach the sign-on letter that you downloaded to the email.

**Sample Message**

Dear [Staffer Name],

I am reaching out today as an advocate for the sleep disorders community and as a constituent from [your hometown]. On behalf of local advocates impacted by restless legs syndrome, I hope your office will join the annual appropriations letter in support of timely report language focused on sleep research and public health activities. The FY 2026 letter is attached and you can complete this form via Quill or contact Arlet Abrahamian at Arlet.Abrahamian@mail.house.gov. Thank you for your time and for your consideration of this request. Please sign on by Friday, May 16th.

[Briefly share your personal RLS story in 2-3 sentences.]

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

Sincerely,

[Name]

[Address]

****

*Please Note: The “quill” link in the sample message will only work for congressional offices (individuals and organizations cannot use it to sign the letter). If you copy and paste the message into an email, the link should be included. The link is also embedded in the sign-on letter.

It is important to reach out as soon as possible, to ensure that your congressional offices have time to review and approve the letter. Thank you for your support as an advocate! If you have questions, please email adrianna@rls.org.