Restless Legs Syndrome Foundation Inc
- Assets
- $923.4k
- Revenue
- $938.9k
- Investments
- $0.0
- Employees
- 4
- Location
- Austin, TX
- Founding
- 01/1993
- Data as of
- 09/2023
- EIN
- 56-1784846
Organization Overview
Restless Legs Syndrome Foundation Inc is located in Austin, TX. The organization was established in 1993. According to its NTEE Classification (H99) the organization is classified as: Medical Research N.E.C., under the broad grouping of Medical Research and related organizations. As of 09/2023, Restless Legs Syndrome Foundation Inc employed 4 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Restless Legs Syndrome Foundation Inc is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 09/2023, Restless Legs Syndrome Foundation Inc generated $938.9k in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 2.1% each year. All expenses for the organization totaled $874.0k during the year ending 09/2023. While expenses have increased by 0.7% per year over the past 8 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Restless Legs Syndrome Foundation Inc has awarded 15 individual grants totaling $734,794. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2023
Describe the Organization's Mission:
Part 3 - Line 1
RLS: RAISE AWARENESS, EDUCATE, IDENTIFY BETTER TREATMENTS & SUPPORT RESEARCH INTO CAUSES & CURES
Describe the Organization's Program Activity:
Part 3 - Line 4a
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, SEVEN WEBINARS ON RLS-RELATED TOPICS WERE OFFERED TO THE PUBLIC. OVER 4,311 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 105,083 ONLINE VISITORS THAT GENERATE OVER 298,549 PAGE VIEWS EACH YEAR. THE RLS FACEBOOK PAGE HAS 13,719 SUPPORTERS AND PARTICIPANTS. THE RLSF BLOG RECEIVED OVER 1,422,702 PAGE VIEWS THIS YEAR, AND THE RLS FOUNDATION YOUTUBE CHANNEL HAS RECEIVED OVER 180,595 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.
SUPPORT GROUPS: THE RLS FOUNDATION SUPPORTS SIXTY-TWO SUPPORT GROUP LEADERS, VIRTUAL SUPPORT GROUP LEADERS AND CONTACT VOLUNTEERS IN THIRTY-SIX STATES AND CANADA. EACH LEADER HOLDS AT LEAST ONE IN-PERSON MEETING PER YEAR IN THEIR LOCAL COMMUNITY. AT THESE MEETINGS, RLS FOUNDATION EDUCATIONAL MATERIALS ARE DISTRIBUTED TO ATTENDEES. SUPPORT GROUP LEADERS WORK WITH A MEDICAL ADVISOR THAT ASSISTS THE GROUP BY PRESENTING ON RLS TOPICS OF INTEREST, SUGGESTING OTHER MEETING PRESENTERS AND OVERALL SUPPORT TO THE GROUP. VIRTUAL SUPPORT GROUPS (VSG) PROGRAM IS AN RLSF PROGRAM THAT PROVIDES FOUR REGULARLY SCHEDULED MONTHLY VIRTUAL GROUP MEETINGS TO CONNECT AND SUPPORT INDIVIDUALS WITH RLS USING VIDEO CONFERENCING ACCESSIBLE TO ALL IN THE RLS COMMUNITY. RLSF EDUCATIONAL MATERIALS FOR DOWNLOAD ARE TO VSG ATTENDEES. THE NUMBER OF INDIVIDUALS REACHED THROUGH VIRTUAL SUPPORT GROUPS WAS 813 (412 UNIQUE INDIVIDUALS - MANY ATTEND MULTIPLE VSG MEETINGS THROUGHOUT THE YEAR).
MEMBERSHIP. THE RLS FOUNDATION SERVES AS A SUPPORT STRUCTURE FOR OVER 23,551 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. 5,529 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 145 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.
RESEARCH. THE RLSF SUPPORTS AND FUNDS RLS RELATED RESEARCH PROJECTS. DURING THE CURRENT FISCAL YEAR, TWO 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), AND THE SECOND USING CANNABIS TO TREAT RESTLESS LEGS SYNDROME: A SAFETY AND FEASIBILITY STUDY.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Karla Dzienkowski Executive Di | Officer | 40 | $90,000 |
Shalini Paruthi Chair | OfficerTrustee | 2 | $0 |
David Loskutoff Secretary | OfficerTrustee | 2 | $0 |
Greg Oberland Treasurer | OfficerTrustee | 2 | $0 |
Lewis Phelps Chair Emerit | OfficerTrustee | 2 | $0 |
Marcia Ball Director | Trustee | 2 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $143,150 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $784,332 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $927,482 |
| Total Program Service Revenue | $0 |
| Investment income | $11,865 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$504 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $938,927 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $10,000 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $49,790 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $125,442 |
| Compensation of current officers, directors, key employees. | $10,957 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $108,292 |
| Pension plan accruals and contributions | $10,736 |
| Other employee benefits | $12,612 |
| Payroll taxes | $16,706 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $56,443 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $41,498 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $65,502 |
| Advertising and promotion | $0 |
| Office expenses | $144,606 |
| Information technology | $55,004 |
| Royalties | $0 |
| Occupancy | $50,564 |
| Travel | $1,559 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $2,535 |
| Interest | $104 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $781 |
| Insurance | $3,883 |
| All other expenses | $0 |
| Total functional expenses | $873,955 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $289,513 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $30,206 |
| Net Land, buildings, and equipment | $9,266 |
| Investments—publicly traded securities | $590,370 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $4,078 |
| Total assets | $923,433 |
| Accounts payable and accrued expenses | $67,093 |
| Grants payable | $29,895 |
| Deferred revenue | $16,945 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $2,478 |
| Total liabilities | $116,411 |
| Net assets without donor restrictions | $628,858 |
| Net assets with donor restrictions | $178,164 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $923,433 |
Grants Awarded
Over the last fiscal year, Restless Legs Syndrome Foundation Inc has awarded $58,498 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
NATIONAL INSTITUTE ON DRUG ABUSE PURPOSE: RESEARCH GRANT | $36,398 |
THE GENERAL HOSPITAL CORPORATION PURPOSE: RESEARCH GRANT | $22,100 |