Restless Legs Syndrome Foundation Blog

Looking for RLS Foundation Volunteers

The RLS Foundation is excited to announce that our 2025 volunteer application is officially open. We are looking for compassionate and collaborative individuals interested in starting a new local RLS support group.

RLS Foundation volunteers are dedicated to supporting others within their community by coordinating meetings in person or virtually and facilitating discussions to share knowledge and experience in living with RLS. By volunteering, you can make a lasting difference to others affected by RLS and remind those in your community that they are not alone.

Local RLS Support Group Leaders serve as catalysts for building a community of mutual support and trust for individuals within their local area. If you are interested in connecting with others in your area who are looking to improve their understanding and management of RLS and you want to make a meaningful difference, starting a local RLS support group in your community may be the perfect fit.

As a local RLS support group leader, your primary responsibilities are to:

• Provide a direct avenue of support and local point-of-contact for individuals seeking to better manage their RLS.
• Foster new connections in your area to grow your group over time.
• Hold at least one meeting annually – either in person or virtually.
• Collaborate with Foundation staff to share our resources and educational materials through publications and webinars.

How to Apply:

To apply to become a Local RLS Support Group Leader, please complete the online volunteer application form. For questions about becoming an RLS Foundation volunteer, contact Kaleigh Maxwell, Program Coordinator at 512.366.9109 or email kaleigh@rls.org.

Deadline EXTENDED: 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, with two grants funded in collaboration with the American Academy of Sleep Medicine Foundation, 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 5 pm CST January 25, 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 online here by no later than 5:00 pm CST January 25, 2025.

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:

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.

RLS Foundation Certifies University of Virginia as a Quality Care Center

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

AUSTIN, TEXAS, January 8, 2025 — The Restless Legs Syndrome (RLS) Foundation announces it has certified the University of Virginia at Charlottesville (UVA) as an RLS Quality Care Center.

An estimated 2% to 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, UVA will serve as a destination for RLS patients who need expert medical care.

“We are extremely honored to receive this prestigious designation,” says Elias Karroum, MD, PhD, director of the Quality Care Center at UVA. “Our goal is to provide exceptional care for RLS patients to make a lasting impact on the health and wellbeing of the patients that we serve. This status ensures adherence to the highest standards of care to manage all levels of RLS severity.”

UVA joins a network of 12 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 regional support groups and for healthcare providers who treat patients with RLS
• 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 UVA 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 UVA to advance the quality of care for RLS patients.”

Other certified RLS Quality Care Centers include:

• 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

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, or RLS. Founded in 1992, the Foundation’s goals are to increase awareness, improve treatments, and, through research, 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:

Karla Dzienkowski, RN, BSN, Executive Director

512-366-9109

karla@rls.org