RESTLESS LEGS SYNDROME FOUNDATION

EIN: 561784846 501(c)(3) Medical Research

AUSTIN, TX

Total Revenue
$1,232,770
Total Expenses
$1,228,928
Total Assets
$1,001,183
Net Assets
$789,679
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1993
Legal Domicile
TX
Principal Officer
KARLA DZIENKOWSKI
Phone
5123669109
Tax Period
2024-10-01 to 2025-09-30

RESTLESS LEGS SYNDROME FOUNDATION, founded in 1993, is a community nonprofit in the Medical Research sector that reported $1.2M in total revenue in fiscal year 2024. Revenue grew 11% year-over-year, indicating healthy expansion.

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.

Program Service Accomplishments

Program 1
Expenses: $493,760 Revenue: $5,000

EDUCATIONAL. PROVIDING TRUSTED, UNBIASED INFORMATION ABOUT RESTLESS LEG SYNDROME TO INDIVIDUALS AND HEALTHCARE PROVIDERS THROUGH PUBLICATIONS, WEBINARS, A WEBSITE, SOCIAL MEDIA SITES, AND DIRECT...

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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.

Program 2
Expenses: $235,898

MEMBERSHIP. THE RLS FOUNDATION SERVES AS A SUPPORT STRUCTURE FOR OVER 640,000 INDIVIDUALS WHO, ON AN ANNUAL BASIS, SEEK INFORMATION ON RLS, EITHER AS ONE WHO HAS RLS OR AS ONE WHO HAS A FRIEND OR...

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MEMBERSHIP. THE RLS FOUNDATION SERVES AS A SUPPORT STRUCTURE FOR OVER 640,000 INDIVIDUALS WHO, ON AN ANNUAL BASIS, SEEK INFORMATION ON RLS, EITHER AS ONE WHO HAS RLS OR AS ONE WHO HAS A FRIEND OR LOVED ONE WHO SUFFERS FROM THE DISEASE. 5,400 MEMBERS HAVE JOINED THE RLS FOUNDATION AND TAKE ADVANTAGE OF THE CLEARINGHOUSE OF SERVICES THAT PROVIDE INFORMATION ON LATEST DEVELOPMENTS IN TREATMENT, COUNSELING AND CONVERSATION WITH OTHERS WHO SHARE THE AFFLICTION. OVER 160 MEDICAL PROFESSIONALS SPECIALIZING IN THE TREATMENT OF RLS ARE MEMBERS OF THE HEALTHCARE PROVIDER DIRECTORY. MEMBER BENEFITS INCLUDE ACCESS TO A PROPRIETARY COLLECTION OF EDUCATIONAL MATERIALS INCLUDING AN RLS MEDICAL BULLETIN FOR HEALTHCARE PROVIDERS, A QUARTERLY NEWS MAGAZINE, A MONTHLY E-NEWSLETTER, A MEDICAL-ALERT CARD AND ACCESS TO THE MEMBERS-ONLY SECTION OF THE RLS WEBSITE. THE FOUNDATION PROVIDES SCHOLARSHIP MEMBERSHIPS FOR THOSE NEEDING ASSISTANCE AND NEVER TURNS ANYONE AWAY SEEKING INFORMATION AND SUPPORT. THE MEMBER WEBSITE PROVIDES VISITORS WITH INFORMATION ABOUT RLS, TREATMENT GUIDELINES, RESEARCH ADVANCEMENTS, ADVOCACY OUTREACH, DISCUSSION PANELS AND LINKS TO RLS FOUNDATION SOCIAL MEDIA SITES.

Program 3
Expenses: $227,229

RESEARCH. THE RLSF SUPPORTS AND FUNDS RLS RELATED RESEARCH PROJECTS. DURING THE CURRENT FISCAL YEAR, FIVE RESEARCH GRANTS WERE AWARDED: ONE GRANT WAS AWARDED FOR THE MULTI-CENTER LONGITUDINAL PILOT...

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RESEARCH. THE RLSF SUPPORTS AND FUNDS RLS RELATED RESEARCH PROJECTS. DURING THE CURRENT FISCAL YEAR, FIVE RESEARCH GRANTS WERE AWARDED: ONE GRANT WAS AWARDED FOR THE MULTI-CENTER LONGITUDINAL PILOT OBSERVATIONAL STUDY OF THE EFFICACY AND TOLERABILITY OF LONG-TERM TREATMENT OF RLS USING OPIOIDS (OPIOID REGISTRY), DEFECTIVE TRANSFERRIN RECEPTOR REGULATION IN THE BLOOD- BRAIN BARRIER ENDOTHELIAL CELLS UNDERLIES BRAIN IRON INSUFFICIENCY IN RLS, PROTEOMIC APPROACH TO UNDERSTANDING THE MECHANISM OF ACTION FOR EXERCISE AS A NON-PHARMACOLOGICAL MANAGEMENT METHOD IN RLS : A PILOT STUDY, CEREBROSPINAL FLUID MELANOCORTIN AND ENDORPHIN IN RESTLESS LEGS SYNDROME- RELATED AUGMENTATION, AND INVOLVEMENT OF CALCITONIN GENE-RELATED PEPTIDE (CGRP) IN RESTLESS LEGS SYNDROME (RLS): CEREBROSPINAL FLUID PROTEOMICS ANALYSIS.

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $1,201,567
Program Service Revenue $5,000
Investment Income $23,123
Other Revenue $3,080
TOTAL REVENUE $1,232,770

Expense Breakdown

Grants Paid $209,482
Salaries & Benefits $330,202
Fundraising Expenses $103,199
Program Expenses $1,013,291
Other Expenses $629,796
TOTAL EXPENSES $1,228,928

Year-over-Year Comparison

2024 2023 Change
Revenue $1,232,770 $1,112,279 +0.1%
Expenses $1,228,928 $1,167,615 +0.1%
Net Income $3,842 $-55,336 -1.1%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
8
Independent Members
8
Employees
6
Volunteers
98

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
4
$148,289
Total Directors
12
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
KARLA DZIENKOWSKI EXECUTIVE DI 40.00
Officer
$134,808 $13,481 $148,289
JEFFREY DURMER CHAIR 2.00
Officer Director
$0 $0 $0
DAVID LOSKUTOFF SECRETARY 2.00
Officer Director
$0 $0 $0
GREG OBERLAND TREASURER 2.00
Officer Director
$0 $0 $0
MARCIA BALL DIRECTOR 2.00
Director
$0 $0 $0
KUNAL AGARWAL DIRECTOR 2.00
Director
$0 $0 $0
JIM FLANIKEN DIRECTOR 2.00
Director
$0 $0 $0
AVINASH AGGARWAL DIRECTOR 2.00
Director
$0 $0 $0
BILL WENDT DIRECTOR 2.00
Director
$0 $0 $0
LEWIS PHELPS DIRECTOR(10/ 2.00
Director
$0 $0 $0
LAURA SCOTT HOFFMAN DIRECTOR(10- 2.00
Director
$0 $0 $0
PAUL VICARY DIRECTOR(10- 2.00
Director
$0 $0 $0
DONNIE KEE DIRECTOR(10/ 2.00
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $1,232,770 $1,228,928 $1,001,183 $3,842
2024 No data No data No data No data
2023 $938,927 $873,955 $923,433 $64,972
2022 $944,438 $777,191 $795,669 $167,247
2021 $851,464 $717,434 $718,099 $134,030
2020 $900,436 $780,802 $718,377 $119,634
2019 $800,307 $842,357 $404,578 $-42,050
2018 $799,084 $830,416 $494,550 $-31,332
2018 $799,084 $830,416 $494,550 $-31,332
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