Prader-Willi Syndrome Association
- Assets
- $2.8m
- Revenue
- $1.6m
- Investments
- $0.0
- Employees
- 16
- Location
- Brandon, FL
- Founding
- 09/1977
- Data as of
- 12/2023
- EIN
- 41-1306908
Organization Overview
Prader-Willi Syndrome Association is located in Brandon, FL. The organization was established in 1977. According to its NTEE Classification (G50) the organization is classified as: Nerve, Muscle & Bone Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2023, Prader-Willi Syndrome Association employed 16 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Prader-Willi Syndrome Association 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 12/2023, Prader-Willi Syndrome Association generated $1.6m in total revenue. The organization has seen a slow decline revenue. Over the past 9 years, revenues have fallen by an average of (1.7%) each year. All expenses for the organization totaled $1.8m during the year ending 12/2023. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Prader-Willi Syndrome Association has awarded 40 individual grants totaling $1,724,658. 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
TO ENHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME.
Describe the Organization's Program Activity:
Part 3 - Line 4a
FAMILY SUPPORT: PWSA/USA'S FAMILY SUPPORT TEAM PROVIDES INDIVIDUALS DIAGNOSED WITH PRADER-WILLI SYNDROME, THEIR FAMILIES, AND CARE PROVIDERS WITH CRITICAL INFORMATION AND RESOURCES ON PWS. WE ALSO PROVIDE EDUCATION TO MEDICAL PROVIDERS, SCHOOLS, AND PROFESSIONAL CARE GIVERS THROUGH ONGOING TRAINING, TOOLKITS AND OTHER VALUABLE RESOURCES. WE SUPPORT THE FAMILY FROM NICU THROUGH ALL STAGES OF THE PWS JOURNEY. IN 2023, PWSA'S FAMILY SUPPORT TEAM RESPONDED TO 3,447 FAMILY SUPPORT INQUIRIES PROVIDING SUPPORT TO FAMILIES IN ALL 50 U.S. STATES AND MORE THAN 20 DIFFERENT COUNTRIES, TRAINED 10 SCHOOLS AND 9 PROVIDER AGENCIES, AND HOSTED A VIRTUAL SLEEP SUMMIT AND A HEALTH CARE ADVOCACY WEBINAR SERIES REACHING OVER 700 REGISTRANTS FOR EACH EVENT.
NATIONAL CONVENTION AND MISCELLANEOUS
ADVOCACY AND AWARENESS: INCREASING AWARENESS AND EFFECTIVELY ADVOCATING FOR PRADER-WILLI SYNDROME AT THE STATE AND FEDERAL LEVEL IS A CRITICAL COMPONENT OF OUR MISSION. WE SEEK TO INVOLVE ALL MEMBERS OF OUR COMMUNITY AND WORK TO KEEP YOU INFORMED ON THE BEST WAYS TO AFFECT CHANGE FOR OUR LOVED ONES. IN 2023, PWSA CONDUCTED A DC FLY-IN FOR 51 ADVOCATES REPRESENTING 21 STATES WHO ATTENDED A COMBINED 76 CONGRESSIONAL MEETINGS AND HOSTED 11 ADVOCACY IN ACTION WEBINARS FOR OUR COMMUNITY.
RESEARCH: PWSA/USA SEEKS TO SUPPORT RESEARCH PROJECTS WITH THE POTENTIAL FOR IMMEDIATE AND HIGH IMPACT FOR THE PWS COMMUNITY. THE GOAL IS TO FAST-TRACK BETTER TREATMENT FOR THE SYNDROME, AND WE PROUDLY COLLABORATE WITH PARTNERS REPRESENTING PHARMACEUTICAL COMPANIES, RESEARCH UNIVERSITIES, AND MORE TO ACHIEVE THAT GOAL. IN 2023, PWSA PAID OUT RESEARCH GRANTS TOTALING $44,460 AND RECEIVED THE FINDINGS FROM 3 OF OUR GRANT FUNDED PROJECTS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Jeffrey Covington Director | Trustee | 3 | $0 |
Lisa Lamb Director | Trustee | 3 | $0 |
Stacy Ward Interim Executive Director | OfficerTrustee | 40 | $81,321 |
Clint Hurdle Director | Trustee | 3 | $0 |
Mitchell Cohen Vice Chair | Trustee | 3 | $0 |
John Lens Director | Trustee | 3 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $264,038 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,089,239 |
| Noncash contributions included in lines 1a–1f | $10,666 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,353,277 |
| Total Program Service Revenue | $181,970 |
| Investment income | $58,198 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $12,936 |
| Net Income from Fundraising Events | -$51,926 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $7,357 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,577,352 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $44,460 |
| Grants and other assistance to domestic individuals. | $10,674 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $198,926 |
| Compensation of current officers, directors, key employees. | $51,377 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $558,396 |
| Pension plan accruals and contributions | $5,012 |
| Other employee benefits | $54,860 |
| Payroll taxes | $59,940 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $0 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $6,903 |
| Fees for services: Other | $36,035 |
| Advertising and promotion | $14,372 |
| Office expenses | $29,536 |
| Information technology | $127,452 |
| Royalties | $0 |
| Occupancy | $10,097 |
| Travel | $104,867 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $42,320 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $9,262 |
| Insurance | $5,126 |
| All other expenses | -$71,070 |
| Total functional expenses | $1,847,424 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $198,045 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $7,108 |
| 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 | $88,416 |
| Net Land, buildings, and equipment | $14,321 |
| Investments—publicly traded securities | $1,231,348 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $1,213,781 |
| Total assets | $2,753,019 |
| Accounts payable and accrued expenses | $54,396 |
| Grants payable | $0 |
| Deferred revenue | $0 |
| 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 | $0 |
| Total liabilities | $54,396 |
| Net assets without donor restrictions | $1,088,865 |
| Net assets with donor restrictions | $1,609,758 |
| 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 | $2,753,019 |
Grants Awarded
Over the last fiscal year, Prader-Willi Syndrome Association has awarded $119,812 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
THE CHICAGO SCHOOL OF PROF PSYCHOLOGY LA PURPOSE: PARENT TRAINING PROGRAM AND PWS HOMEBASE | $94,812 |
UNIVERSITY OF SOUTH FLORIDA PURPOSE: DMCC @ USF ANNUAL SUPPORT FOR PROTOCOL 52 AND 8208 | $25,000 |