Restless Legs Syndrome Foundation

Nonprofit profile at a glance

EIN
561784846
IRS 990 coverage
2014–2024
Forms available
Form 990 2024, Form 990-T 2024
Location
Austin, TX, USA
Phone
5123669109
Rating
80
Verdict
STRONG
Rating confidence
Moderate
Sector
Medical Research N.E.C.

Official website

Reported finances

Revenue
$1,232,770
Expenses
$1,228,928
Assets
$1,001,183
Liabilities
$211,504

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

13 people listed

Highest reported compensation

  • KARLA DZIENKOWSKI (EXECUTIVE DI): $148,289 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The corporation is organized to increase scientific and public understanding of restless legs syndrome or rls, to encourage and provide funding for research leading to treatments and cure for the disease, to provide support to those suffering from the disease, to be the leading center for information on all aspects of the disease, and to carry on such other activities related to the disease, its treatments and cure, as may be designated by the board from time to time.

What it reported doing in 2024

Educational. Providing trusted, unbiased information about restless leg syndrome to individuals and healthcare providers through publications, webinars, a website, social media sites, and direct communications. Publications include: a general informational brochure on rls and rls and plmd in children and adolescents; rls guide for teens, rls guide for children, twenty-four different handouts on rls specific topics directed towards patients; a quarterly news magazine; monthly online e-newsletter; two specialty brochures directed to healthcare providers; and a medical bulletin issued as developments merit. During this fiscal year, nine webinars on rls-related topics were offered to the public. Over 1200 registrants viewed these webinars. The 12-part educational physician webinar series was open to physicians, nurse practitioners and physician assistants to enhance clinical knowledge regarding diagnosis, treatment and management of rls patients. This webinar series is available on demand. The organization's website www.rls.org attracts over 640,000 online visitors that generate over 27,900,00 page views each year. The rls facebook page has 14,595 supporters and participants. The rlsf blog has received over 1,878,417 page views and the rls foundation youtube channel has received over 271.5k views. The foundation executes a public policy initiative program whose goals are to raise awareness and provide education around three specific areas: what is rls and how many are affected; the need for increased medical research funding; and the need for access to appropriate treatment for individuals with rls.

Operating model

Revenue model
Donor-supported. 87% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 79% for direct work, and 21% for grants.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 78
  • Transparency & Controls: 77
  • Accountability: 95
  • Sustainability: 35
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 82.6%; rating input score 83
  • Program expense ratio: 82.5%; rating input score 82
  • Fundraising efficiency: $11.64 raised per $1 spent on fundraising; rating input score 43; 43rd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 76th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 7 of 8 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 0.3%; rating input score 37; 37th percentile among comparable filings
  • Total-asset coverage ratio: 0.81; rating input score 36; 36th percentile among comparable filings
  • Liabilities to assets ratio: 0.21; rating input score 30; 30th percentile among comparable filings
  • Officer compensation ratio: 12.1%; rating input score 30; 30th percentile among comparable filings

Growth

  • Program expense growth: 5% per year; rating input score 100; 42nd percentile among comparable filings
  • Revenue growth: 5% per year; rating input score 100; 43rd percentile among comparable filings
  • Asset growth: 7.5% per year; rating input score 100; 50th percentile among comparable filings

Details

  • Where the money goes: 82.6% of revenue deployed · 82.5% of spending went to programs
  • Governance: 8 of 8 board members independent · 7 of 8 filing controls reported
  • Programs: 4 filed program accomplishments · $1M in reported program spending
  • Leadership: top reported pay $148K · 13 people listed
  • Consistency: 37 of 37 current checks pass
  • Schedules: 7 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 11 filing years from 2014 to 2024
  • Contacts: How to reach this organization
  • Money network: 5 filed money-flow records
  • Related organizations: 4 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight: 7 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 43/100.
  • Moderate — Sustainability: Operating margin scored 37/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 36/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 30/100.
  • Moderate — Sustainability: Officer compensation ratio scored 30/100.