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Health : Diseases, Disorders, and Disciplines

Restless Legs Syndrome Foundation

Addressing the need for research and information about restless legs syndrome.

impact data icon

Impact Information is available from our partner, GuideStar

three stars

88.62

3006 Bee Caves Road Suite D206
Austin, TX 78746
tel: (512) 366-9109   Web Site
EIN: 56-1784846

Board Leadership
Lewis Phelps
Chair

CEO
Karla M. Dzienkowski
Executive Director

 
 
  Score
(out of 100) 		Rating
Overall Score & Rating 88.62 three stars
  Financial 83.91 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 08/01/2019 and includes data from FY2018, the most recent 990 received at that time.
Why isn't this based on more recent data?

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 40 research projects.

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 40 research projects.

Impact Information

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GuideStar is Charity Navigator's trusted partner in sharing information on how this organization seeks impact.  GuideStar has recognized this organization with a Platinum Seal of Transparency for voluntarily and publicly sharing information about how they measure their progress and results.  Learn More about Impact Information.
Reported Results
Total in 2018
Number of certified RLS Quality Care Centers
11
Dollars used for educational programs
493,624
Dollars used for RLS research via Research Grant Program
9,668
This organization has earned a GuideStar's Platinum Seal of Transparency by voluntarily sharing the measures of progress and results they use to pursue their mission. Organizations earn Platinum Seals by selecting from a catalog of over 900 expert recognized metrics or by creating a new metric that best fits their work. This information is reported by the organization and displayed publicly on their GuideStar Nonprofit Profile. With over 1.6 million Nonprofit Profiles, 9 million annual visitors and over 200 data partners, GuideStar is the world's leading source of information about nonprofit organizations. A nonprofit itself, GuideStar is dedicated to providing better data for better decisions for a better world.
This impact information is current as of July 2019, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

Learn more about how we calculate the overall score and rating.

Financial

three stars

83.91

Accountability & Transparency

four stars

100.00

This rating was published 08/01/2019 and includes data from FY2018, the most recent 990 received at that time.
Why isn't this based on more recent data?
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)		 76.5%
  Administrative Expenses 9.5%
  Fundraising Expenses 13.8%
  Fundraising Efficiency $0.15
  Working Capital Ratio (years) 0.44
  Program Expenses Growth 7.8%
  Liabilities to Assets 23.4%
All data for Financial Performance Metrics calculations was provided by Restless Legs Syndrome Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Restless Legs Syndrome Foundation on recent 990s filed with the IRS.
Information Provided on the Form 990  
  Independent Voting Board Members
  No Material diversion of assets
  Audited financials prepared by independent accountant
  Does Not Provide Loan(s) to or Receive Loan(s) From related parties
  Documents Board Meeting Minutes
  Provided copy of Form 990 to organization's governing body in advance of filing
  Conflict of Interest Policy
  Whistleblower Policy
  Records Retention and Destruction Policy
  CEO listed with salary
  Process for determining CEO compensation
  Board Listed / Board Members Not Compensated
Is the following information easily accessible on the charity's website?  
  Donor Privacy Policy
  Board Members Listed
  Audited Financials
  Form 990
  Key staff listed

Highly Rated

Charity Name & State Overall Score Overall Rating
Restless Legs Syndrome Foundation (TX) 88.62 three stars
Friedreich's Ataxia Research Alliance (PA) 98.23 four stars
Osteogenesis Imperfecta Foundation (MD) 93.31 four stars
Aplastic Anemia & MDS International Foundation (MD) 92.00 four stars
National Osteoporosis Foundation (VA) 89.09 three stars

Compare These Charities (Highly Rated)

REVENUE  
Contributions  
   Contributions, Gifts & Grants $641,810
   Federated Campaigns $0
   Membership Dues $137,352
   Fundraising Events $0
   Related Organizations $0
   Government Grants $0
Total Contributions $779,162
   Program Service Revenue $0
Total Primary Revenue $779,162
   Other Revenue $19,922
TOTAL REVENUE $799,084
   
EXPENSES  
   Program Expenses $614,697
   Administrative Expenses $93,565
   Fundraising Expenses $122,154
TOTAL FUNCTIONAL EXPENSES $830,416
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-31,332
   
Net Assets $378,549

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Education $426,451 69.4%
Membership $148,868 24.2%
Support Groups $29,709 4.8%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2018-09 08/01/2019 88.62 three stars
2017-09 08/01/2018 91.16 four stars
2016-09 12/22/2017 90.96 four stars
2016-09 10/01/2017 89.33 three stars
2015-09 12/01/2016 89.27 three stars
2015-09 11/01/2016 88.90 three stars
2014-09 06/01/2016 89.66 three stars
 
CN 2.0
2014-09 11/01/2015 85.01 three stars
2013-09 10/01/2014 90.21 four stars
2012-09 08/01/2013 79.69 two stars
2011-09 05/01/2012 81.39 three stars
2010-09 09/20/2011 79.49 two stars
 
CN 1.0
2009-09 04/01/2011 72.94 two stars
2008-09 09/01/2009 72.65 two stars
2007-09 06/01/2008 69.98 one star
2006-09 04/01/2007 79.02 two stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 56-1784846
Name in IRS Master File RESTLESS LEGS SYNDROME FOUNDATION INC
NTEE Code H99
NTEE Classification Medical Research N.E.C.
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (161) Scientific research (diseases)
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
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).
Group Name [Not Applicable]
Ruling Date January, 1993
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End September
IRS Forms 990
(provided courtesy of Foundation Center)		 (Log In or Register Now to View Forms 990!)
  • September, 2017
  • September, 2016
  • September, 2015
  • September, 2014
  • September, 2013
Compensation % of Expenses Paid to Title
$80,384 9.67% Karla Dzienkowski Executive Director

Highly Rated

Charity Name & State Overall Score Overall Rating
Restless Legs Syndrome Foundation (TX) 88.62 three stars
Charcot-Marie-Tooth Association (PA) 87.39 three stars
Can Do Multiple Sclerosis (CO) 99.39 four stars
Parent Project Muscular Dystrophy (NJ) 93.98 four stars
Osteogenesis Imperfecta Foundation (MD) 93.31 four stars

Compare These Charities (Highly Rated)

This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Restless Legs Syndrome Foundation
3006 Bee Caves Road
Suite D206
Austin, TX 78746
tel: (512) 366-9109
fax: (512) 366-9189
EIN: 56-1784846

Visit Web Site

Board Leadership

Lewis Phelps
Chair

CEO

Karla M. Dzienkowski
Executive Director

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