Mission: In 1992 the Restless Legs Syndrome Foundation was incorporated to address the growing need for research and information about restless legs syndrome. The goals were  ... (More)

Restless Legs Syndrome Foundation is a 501(c)(3) organization, with an IRS ruling year of 1993, and donations are tax-deductible.

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Contact Information

  http://www.rls.org/

 3006 Bee Caves Road
Suite D206
Austin TX 78746 

  512-366-9109


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Star Rating System by Charity Navigator


Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.




Good

This charity's score is 85.37, earning it a 3-Star rating. Donors can "Give with Confidence" to this charity. 

This score is calculated from two sub-scores:

This score represents Form 990 data from 2019, the latest year published by the IRS.

View this organization’s historical ratings.


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Star Rated Report

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Program Expense

Program Expense Ratio

79.9%


The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).


This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Administrative Expenses

9.8%


As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Fundraising Expenses

10.2%


This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Liabilities to Assets Ratio

18.9%


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).


Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.


Source: IRS Form 990

Fundraising Efficiency

$0.11


The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.


Source: IRS Form 990

Working Capital Ratio

0.38 years


Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.


Source: IRS Form 990

Program Expense Growth

2.28%


We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.


Source: IRS Form 990

Governance


Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.


Sources Include: IRS Form 990

Governance:
Independent Voting Board Members  ... (More)
No Material Diversion of Assets ... (More)

A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:

  • Full Credit: There has been no diversion of assets within the last two years.

  • Partial Credit: There has been a diversion of assets within the last two years and the charity has used Schedule O on the Form 990 to explain: the nature of the diversion, the amount of money or property involved and the corrective action taken to address the matter. In this situation, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: There has been a diversion of assets within the last two years and the charity's explanation on Schedule O is either non-existent or not sufficient. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
Audited Financials Prepared by Independent Accountant ... (More)

Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.

  • Full Credit: The charity's audited financials were prepared by an independent accountant with an audit oversight committee.

  • Partial Credit: The charity's audited financials were prepared by an independent accountant, but it did not have an audit oversight committee. In this case, we deduct 7 points from the charity's Accountability and Transparency score.
  • No Credit: The charity did not have its audited financials prepared by an independent accountant. In this case, we deduct 15 points from the charity's Accountability and Transparency score.
(Less)
Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More)
Documents Board Meeting Minutes ... (More)
Distributes 990 to Board Before Filing ... (More)
Compensates Board ... (More)

Policies


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.


Sources Include: IRS Form 990 and organization's website

Policies:
Conflict of Interest  ... (More)
Whistleblower ... (More)
Records Retention and Destruction ... (More)
CEO Compensation Process ... (More)
Donor Privacy ... (More)

Donors have expressed extreme concern about the use of their personal information by charities and the desire to have this information kept confidential. The exchanging and sale of lists for telemarketing and the mass distribution of "junk mail," among other things, can be minimized if the charity assures the privacy of its donors. Privacy policies are assigned to one of the following categories:

  • Yes: This charity has a written donor privacy policy published on its website, which states unambiguously that (1) it will not share or sell a donor's personal information with anyone else, nor send donor mailings on behalf of other organizations or (2) it will only share or sell personal information once the donor has given the charity specific permission to do so.

  • Opt-out: The charity has a written privacy policy published on its website which enables donors to tell the charity to remove their names and contact information from lists the charity shares or sells. How a donor can have themselves removed from a list differs from one charity to the next, but any and all opt-out policies require donors to take specific action to protect their privacy.
  • No: This charity either does not have a written donor privacy policy in place to protect their contributors' personal information, or the existing policy does not meet our criteria.

The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes.

(Less)

Transparency


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.


Sources Include: IRS Form 990 and organization's website

Transparency:
CEO Salary Listed on 990 ... (More)
Board of Directors Listed on Website ... (More)
Key Staff Listed on Website ... (More)
Audited Financial Statements on Website ... (More)
Form 990 Available on Website ... (More)

Additional Information

Unscored

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Total Revenue and Expenses

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Salary of Key Persons

Presented here are this organizations key compensated staff members as identified by our analysts. This compensation data includes salary, cash bonuses and expense accounts and is displayed exactly how it is reported to the IRS. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting



Karla Dzienkowski, Executive Director

$85,280 (10.12% of Total Expenses)


Source: IRS Form 990 (page 7), filing year 2020

Business Master File Data

Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website


Activities:

Scientific research (diseases) (BMF activity code: 161)


Foundation Status:

Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi) (BMF foundation code: 15)


Affiliation:

Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)

Data Sources: IRS Forms 990

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).

Pandemic Response

Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.


Restless Legs Syndrome Foundation reported being impacted by COVID-19 in the following ways:
  • Program Delivery

  • Fundraising Capacity

  • Revenue

  • Staffing

  • Administrative Capacity

  • Grants Sent

  • Balance Sheet


How COVID-19 impacted the organization's operations financially:

Donations to our organization decreased by 30%. We applied for PPP loans and maintained staffing.


How COVID-19 impacted the organization's delivery of programs:

The COVID-19 pandemic prevented us from executing our scheduled programing thereby affecting our programming expense growth. The RLS Foundation's Research Grant Program was paused due to research laboratory closings, limitation placed on the number of staff allowed in the lab and PPE shortages. Our RLS National Patient Symposium scheduled for October 2020 was postponed by the hosting site until 2022 due to social distancing guidelines that prohibit large gatherings of individuals. All in-person support group meeting were cancelled until it is safe to gather in large groups.


How this organization adapted to changing conditions caused by COVID-19:

The RLS Foundation shifted our programing to online offerings. The creation of the Virtual Support Group has allowed individuals with RLS to meet online, offer support and hope to one another. The Virtual RLS Summit gave individuals with RLS the opportunity to attend the one-day summit online to learn about RLS from the experts, meet in small groups online and to connect with others living with the disease. The Foundation conducted two virtual advocacy months. During April 2020 and April 2021, we encouraged individuals with RLS to share their RLS journey with their representatives in congress.


Innovations the organization intends to continue permanently after the pandemic:

The Virtual Support Group meetings offered four times monthly will continue going forward. These meetings allow individuals to connect with others, share their experiences and offer support. We are planning another Virtual RLS Summit until we can safely meet again in person. The COVID-19 pandemic promoted the use of computers by individuals and increased users ability to access online educational materials. Our Advocacy Day on Capitol Hill will continue to include a virtual component. This will allow greater participation in this event by community members who are unable to travel due to their RLS.


Historical Ratings

Date PublishedForm 990 FYEOverall ScoreOverall Rating
Rating Version: 2.1
8/11/20212019 85.37
2/1/20212019 85.22

This organization received multiple star ratings within this fiscal year, due to an update to it's Accountability and Transparency data and/or the receipt of an amended Form 990.

10/1/20192018 89.88
8/1/20192018 88.62
8/1/20182017 91.16
12/22/20172016 90.96
10/1/20172016 89.33
12/1/20162015 89.27
11/1/20162015 88.90
6/1/20162014 89.66
Rating Version: 2.0
11/1/20152014 85.01
10/1/20142013 90.21
8/1/20132012 79.69
5/1/20122011 81.39
9/20/20112010 79.49
Rating Version: 1.0
4/1/20112009 72.94
9/1/20092008 72.65
6/1/20082007 69.98
4/1/20072006 79.02

...   Impact & Results


This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.


Impact & Results Score

Not Currently Scored

Restless Legs Syndrome Foundation cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.

Learn more about Impact & Results.

Do you work at Restless Legs Syndrome Foundation? Join the waitlist for an updated Impact & Results score.


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Additional Information

Unscored

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Largest Programs

Largest Programs



Restless Legs Syndrome Foundation reported its three largest programs on its FY 2020 Form 990 as:


$344,014

Spent in most recent FY

55%

Percent of program expenses


EDUCATIONAL. PROVIDING TRUSTED, UNBIASED INFORMATION ABOUT RESTLESS LEG SYNDROME [ALSO KNOWN AS WILLIS-EKBOM DISEASE] TO INDIVIDUALS AND HEALTHCARE PROVIDERS THROUGH PUBLICATIONS, WEBINARS, A WEBSITE, ... (More)


$189,749

Spent in most recent FY

30%

Percent of program expenses


MEMBERSHIP. THE RLS FOUNDATION SERVES AS A SUPPORT STRUCTURE FOR OVER 16,000 INDIVIDUALS WHO, ON AN ANNUAL BASIS, SEEK INFORMATION ON RLS, EITHER AS ONE WHO SUFFERS FROM THE DISEASE OR AS ONE WHO HAS  ... (More)


$46,873

Spent in most recent FY

7%

Percent of program expenses


RESEARCH. THE RLSF SUPPORTS AND FUNDS RLS RELATED RESEARCH PROJECTS. DURING THE CURRENT FISCAL YEAR, TWO GRANTS WERE MADE TO RESEARCHERS STUDYING: HOW OPIOID MEDICATIONS WORK IN THE BRAIN TO RELIEVE R ... (More)


...   Leadership & Adaptability


This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.


Leadership & Adaptability Score

100

out of 100

The score earned by Restless Legs Syndrome Foundation is a passing score.

Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.


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Leadership & Adaptability Report

100

of 100 points

Mission

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission


In 1992 the Restless Legs Syndrome Foundation was incorporated to address the growing need for research and information about restless legs syndrome. The goals were simple and yet groundbreaking: increase awareness, improve treatments, and, through research, find a cure. Today those goals have taken on a life of their own. Our understanding of restless legs syndrome has also grown. We now know that the condition is not rare at all. In fact, recent research suggests that up to 10 percent of the general population has this neurological condition. The Foundation increases awareness of this disease by raising its profile and educating the public and medical communities alike; strives to be the most reputable source of information; and has taken giant steps to further RLS research, funding grants for 48 research projects totaling nearly $2 million.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


To provide scientific based information to educate patients and healthcare providers, offer support and provide hope for all living with RLS.


Source: Nonprofit submitted responses

Strategic Goals

The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.


Goal One: To increase public and professional understanding of RLS.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Two: Provide support to those suffering from the disease.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Three: Support clinical and basic research to discover effective treatments and a cure.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

The RLS Foundation fosters leadership development through formal and informal means within the organization. All staff members are contributors to our quarterly news magazine, NightWalkers. Staff are encouraged to develop and execute programs that they are passionate about that support the Foundation's mission. All staff members are encouraged to take education courses that enhance their position at the Foundation. The Foundation's Board Chair and Executive Director are active members of a nonprofit advocacy consortium to educate policymakers about RLS and other sleep disorders. The Foundation's Executive Director is active at the local level in the Chamber of Commerce and nonprofit network.

Source: Nonprofit submitted responses

Mobilizing for Mission

The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.


This organization mobilizes for mission in the following ways:
  • Strategic Partnerships

  • Networks of Collective Impact Efforts

  • Thought Leadership

  • Raising Awareness

  • Community Building

  • Policy Advocacy

What are this organization’s external mobilizaton efforts?

The Foundation has enhanced and expanded our outreach to include advocacy at the local, state and national level. The Foundation's website dedicated advocacy section provides templates for successful constituent interactions with legislators. All Scientific and Medical Advisory Board members publish, present at conferences and conduct RLS research. The Foundation's Support Group Program includes over 70 volunteers who provide support to the RLS community at the local level. The Foundation collaborates with the AASM and IRLSSG to serve as the voice for the RLS community. The Foundation's vast library of educational materials are made available for patients and healthcare providers seeking scientific based materials. Monthly webinars feature leading experts who share information and treatment information while responding to viewer’s questions. The Physician Webinar Series is a free on-demand program available to educate healthcare providers about RLS disease management.

Source: Nonprofit submitted responses

Story of Adaptability

The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.


The RLS Foundation has weathered many challenges in its twenty-nine years, the 2020 worldwide pandemic is no exception. A pandemic brought new challenges and new ways to reinvent processes. The nationwide shut down created a “new normal” with all processes moving online for staff and constituents. A new phone system with additional remote capabilities allowed us to stay connected with individuals seeking information and support. Online meetings allowed continued outreach to our constituents, board members and staff. The creation of the Virtual RLS Support Group allowed the Foundation to connect four times monthly online with other community members given social restrictions on in person gatherings for support groups. The National RLS Summit held online provided a day of education from leading RLS experts and allowed others in the RLS community to connect and be part of a supportive community during the pandemic. Breakout sessions allowed participants to meet with the experts and attend a live question and answer session. The Advocacy Program transition to a virtual program allowed for education of our legislators by the RLS community. The inability to travel for individuals with severe RLS gave these individuals to share their RLS experience with legislators using templates provided in the advocacy section of the Foundation’s website – www.rls.org. The Foundation’s quarterly news magazine, NightWalkers, continued to educate and support the RLS community during the pandemic. RLS Foundation certified Quality Care Centers telemedicine appointments provided RLS patients with access to care from knowledgeable and experienced provider—a first for some patients. The Foundation’s Richard P Allen Memorial Research Grant for young investigators is a new program to honor this Ekbom Award Recipient and thought leader in the field of RLS. The Foundation reorganized its Research Grant Program during the pandemic in preparation for lab re-openings.

Source: Nonprofit submitted responses

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


Culture & Community Score

Not Currently Scored

Restless Legs Syndrome Foundation is currently not eligible for a Culture & Community score because we have not received its Constituent Feedback data. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.


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Culture & Community Report

Unscored

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Constituent Feedback

Constituent Feedback


Constituent Feedback and Listening Practice data are not available for this organization. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.


Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We award every nonprofit that completes the Candid survey full credit for this Beacon, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. Although the data is not evaluated for quality at this time, future iterations of this Beacon will include third party or other data that will serve to validate the information provided by the nonprofit.

Analysis and Research


Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.

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