Disease, Disorders, Medical Disciplines

RESTLESS LEGS SYNDROME FOUNDATION INC

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

Austin, TX

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

1993

Executive Director

Ms. Karla M. Dzienkowski

Main Address

3006 Bee Caves Road Suite D206

Austin, TX 78746 USA

Keywords

restless legs syndrome, RLS, willis-ekbom disease, WED, support groups, awareness, education, health, sleep, disorder

EIN

56-1784846

 Number

0642218444

Cause Area (NTEE Code)

Specifically Named Diseases (G80)

IRS Filing Requirement

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

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Social Media

Blog

Programs + Results

What we aim to solve New!

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

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

SOURCE: Self-reported by organization

RLS Support Group + Contact Network

RLS Quality Care Center Network

Monthly Webinar Series

Research Grant Program

Where we workNew!

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of certified RLS Quality Care Centers

TOTALS BY YEAR
Population(s) served

People with diseases and illnesses

Related program

RLS Quality Care Center Network

Context notes

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 RLS.

Dollars used for educational programs

TOTALS BY YEAR
Population(s) served

People with diseases and illnesses

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

TOTALS BY YEAR
Population(s) served

People with diseases and illnesses

Context notes

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

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

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.
• 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 close to $1.6 million in competitive research grants. In 2016, the Research Grant Program was reinvigorated to increase funding to $200,000 annually for up to eight pilot 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.

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.

Our full measure of success will be measured only when RLS is well understood to be a treatable, even curable disease. Markers along that path will include:
- Inclusion of information about RLS in medical school curricula,
- Publication of RLS research articles in high quality peer review journals, as well as in treatment guideline applications available to healthcare providers on their smart phones and tablets
- Dedicated funding for research at the national level (National Institutes of Health, Department of Defense)
- Continued expansion of our certified RLS Quality Care Center and RLS Healthcare Provider network
- Yearly continued growth of Foundation memberships
- Active support groups and support contacts in all 50 states

Since 1992, the RLS Foundation has provided over $1.6 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. In 2016, in order to reinvigorate this program, the Foundation committed to

- Increase research funding to $200,000 annually for up to eight pilot grants
- Accept grant proposals on a continual basis, rather than just once per year, using the same rigorous review process currently used to evaluate grant proposals
- Provide counsel to RLS Foundation grant seekers to improve the strength and outcomes of their research studies
- Identify potential sources (NIH, DOD) of later-stage funding for grantees
- Expand the reach to biotech and medical technology companies as collaborators that can help achieve progress toward a cure

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 17,000 individuals with the most up-to-date information on RLS and Foundation activities.

This past year, the also Foundation published its very first interactive children's booklet, The Adventures of Patty Pillow, as part of the Kids and RLS initiative. The Foundation also updated the RLS Medical Bulletin -- the comprehensive publication for physicians that provides the latest information on the care and management of RLS patients -- as well as the RLS and PLMD in Children and Adolescents brochure.

Additionally, the Foundation hit an enormous milestone this year by surpassing 10,000 likes on Facebook. The Foundation's presence on other social media outlets like Twitter, Instagram, YouTube and Google+ have also 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 growing Foundation membership.

External Reviews

Financials

RESTLESS LEGS SYNDROME FOUNDATION INC

Fiscal year: Oct 01 - Sep 30

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Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2015
A Pro report is also available for this organization for $125.
Click here to see what's included.

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Race & Ethnicity

This organization reports that it does not collect this information for Board Members, Senior Staff, Full-Time Staff and Part-Time Staff.

Sexual Orientation

This organization reports that it does not collect this information for Board Members, Senior Staff, Full-Time Staff and Part-Time Staff.

Disability

This organization reports that it does not collect this information for Board Members, Senior Staff, Full-Time Staff and Part-Time Staff.

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity
Diversity notes from the nonprofit
The RLS Foundation works on the issue of a specific disease that affects every segment of society without regard to race, gender, religion, sexual orientation, age, or other factors. As such, the Foundation does not collect information on any of these personal characteristics from its members; its information and services are available to all on a non-discriminatory basis.