Restless Legs Syndrome Foundation Blog

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

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

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:

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.

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.