PLATINUM2024

RESTLESS LEGS SYNDROME FOUNDATION INC

More strength, more knowledge, more hope for a cure.

Austin, TX   |  www.rls.org

Mission

The Restless Legs Syndrome Foundation is a patient services organization dedicated to (1) increasing understanding of this disease among health care professionals and the public, (2) providing support to those with the disease, and (3) supporting basic and clinical research designed to improve treatment and find an eventual cure.

Ruling year info

1993

Executive Director

Ms. Karla M. Dzienkowski

Main address

3006 Bee Caves Road Suite D206

Austin, TX 78746 USA

Show more contact info

Formerly known as

Willis-Ekbom Disease Foundation

EIN

56-1784846

NTEE code info

Specifically Named Diseases (G80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2023, 2022 and 2021.
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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

RLS is one of the most widespread, serious yet unrecognized diseases. Estimates suggest that between 7 to 8 percent of the population are afflicted. Many physicians are unaware of the disease, and unknowingly subject their patients to unsympathetic treatment or even medications known to aggravate the condition.

Given this lack of understanding, a major aim of the Foundation's work is to increase public and professional understanding of RLS. No patient should have to convince his or her physician that the pain and disruption that RLS can inflict is not “just in your imagination." Those suffering from RLS need accurate information about available treatments and coping strategies.

Little attention is paid to locating treatments for RLS, especially with its serious impacts on productivity and quality of life. The Foundation supports the largest research program in the US dedicated to discovering underlying causes for RLS, with the hope that those discoveries will lead to a cure.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

RLS Support Group + Contact Network

Restless legs syndrome (RLS) support groups bring people together to share their experiences, coping strategies, and to build a community of care on which RLS patients and their families can depend.

The RLS Foundation currently has over 70 support groups and a network of remote support contacts throughout the United States and Canada.

Additionally, we host four monthly virtual support groups which serves people all over the world.

Population(s) Served
People with diseases and illnesses
Adults

In 2013, we launched our RLS Quality Care Center Certification Program to give RLS patients access to a gold standard of care at institutions that specialize in treating this disease. Centers are staffed by leading RLS specialists who provide expert care and specialized disease management.

To achieve certification, Centers undergo review by the RLS Foundation's Scientific and Medical Advisory Board and must demonstrate a high level of expertise and experience treating the disease.

Population(s) Served
People with diseases and illnesses
Adults

The RLS Foundation offers free webinars on topics that are critical to understanding and coping with restless legs syndrome (RLS). Attending a webinar is a great opportunity to share questions and comments with other patients, medical professionals and RLS experts. Our one-hour webinars include a Question & Answer session in which our speaker answers questions submitted with registration.

Population(s) Served
People with diseases and illnesses
Adults

The RLS Foundation Research Grant Program supports basic and clinical restless legs syndrome (RLS) research. The Foundation challenges the research community to generate novel ideas to unlock the mysteries that will ultimately lead to a cure for this often devastating disease.

Launched in 1997, the Research Grant Program has funded nearly $2 million in competitive research grants for the study of RLS.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of certified and/or recertified RLS Quality Care Centers

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Related Program

RLS Quality Care Center Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Centers undergo review by the RLS Foundation's Scientific and Medical Advisory Board, and must demonstrate a high level of expertise and experience in treating RLS. Four centers recertified in 2022.

Dollars used for educational programs

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Providing trusted, unbiased information about restless legs syndrome to individuals and healthcare providers through publications, educational webinars, the RLS Foundation website, and social media.

Dollars used for RLS research via Research Grant Program

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

The RLS Foundation Research Grant Program supports basic and clinical restless legs syndrome research.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

We seek to increase public and professional understanding of a serious, widespread neurological condition, to provide support to those suffering from the disease, and to support clinical and basic research to discover effective treatments and an eventual cure.

Increasing Public and Professional Understanding of the Disease:
• The Foundation publishes an acclaimed quarterly news magazine, NightWalkers, that is distributed to members and health professionals. This publication contains the latest information concerning the disease and its treatment, updates on current research studies, together with articles from RLS sufferers reporting on their own coping strategies.
• The Executive Director and members of the Foundation's Board of Directors and Scientific and Medical Advisory Board attend numerous professional medical and scientific meetings every year to increase awareness and to create networks of engaged scientists and clinicians.
• The Foundation sponsors monthly webinars that feature leading RLS experts who share information and treatment information to viewers and respond to submitted questions.

Providing Support to Those Suffering From the Disease:
• Articles in the Foundation's news magazine, NightWalkers, provide information and support from others suffering from the disease.
• Four monthly virtual support meetings are hosted each month available to people worldwide on Zoom. A network of over 70 volunteer support group leaders and contacts in the US and Canada bring individuals together to share their RLS experiences and discuss coping strategies. Volunteer contacts are available to provide support via phone or email, while support group leaders hold meetings that help build a community of care on which RLS patients and their families can depend.
• The Foundation library of over 30 publications are made available to those seeking information on topics specific to the disease. These materials serve to educate individuals and health care providers about conditions unique to RLS suffers. The Foundation's online Discussion Board provides a safe place online for RLS sufferers to share their stories and hear from others 24/7, no matter where they are located.

Support Basic and Clinical Scientific and Medical Research:
• The RLS Foundation's Research Grant Program is the only one of its kind to exclusively support basic and clinical RLS research. Since 1997, the Foundation has funded nearly $2 million in competitive research grants.
• The Foundation's Scientific and Medical Advisory Board (SMAB) consists of expert researchers and clinicians in the fields of Neurology, Movement Disorders, Sleep Medicine and Research. This group is responsible for monitoring medical and scientific research issues, reviewing the Foundation's vast library of publications, reviewing Research Grant Program applications and advising the Board of Directors on issues of medical or scientific interest and importance.

RLS Foundation Quality Care Centers:
• The RLS Foundation offers a network of twelve certified RLS Quality Care Centers across the US and Europe staffed by leading RLS specialists who provide expert care and specialized disease management.

As the only patient-focused organization that supports individuals with RLS, the scale of the problem may seem overwhelming. However, our strategies are designed to give us a presence larger than may initially appear possible. Our voice is amplified by the work of dedicated volunteers located across the country; we provide them with the information and support for increasing knowledge of RLS in their local communities and states. Additionally, we provide information to those we believe may need to know more about the disease through a program of targeted mailings conducted during the year. Some of those who receive our messages become members, but our primary purpose is to broadly increase awareness. We make ourselves available – and actively solicit – opportunities to speak on radio and TV and through print publications. A staff member is dedicated to maintaining an active presence on social media – Facebook, Twitter, Instagram and others – to reach audiences who depend on electronic communication.

Since 1992, the RLS Foundation has provided nearly $2 million in support of RLS research. These grants have unearthed the first gene variant for RLS, studied the economic burden of RLS, and sought new treatment options, just to name a few.

The RLS Foundation has also committed to a variety of awareness initiatives, like producing a free monthly webinar series, publishing NightWalkers -- a quarterly member magazine – and sending a free monthly e-newsletter to over 24,000 individuals with the most up-to-date information on RLS and Foundation activities.

The Foundation's presence on social media outlets like Facebook, Twitter, Instagram, and YouTube have grown exponentially and helped spread awareness to those that may not have known about the Foundation's awareness and education outreach on behalf of the RLS community.

Future goals also include a commitment to expand the RLS Quality Care Center network, strengthen the Foundation's RLS Healthcare Provider Directory, and grow Foundation membership.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

RESTLESS LEGS SYNDROME FOUNDATION INC
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

RESTLESS LEGS SYNDROME FOUNDATION INC

Board of directors
as of 03/13/2024
SOURCE: Self-reported by organization
Board chair

Dr. Shalini Paruthi

Jacquelyn Bainbridge

Paul Rochester

Shalini Paruthi

Jeffrey S. Durmer

Marcia Ball

Greg Oberland

David Loskutoff

Laura Hoffman

Lew Phelps

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 1/31/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 10/05/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.