Prader-Willi Syndrome Association
- Assets
- $2.4m
- Revenue
- $1.7m
- Investments
- $0.0
- Employees
- 18
- Location
- Sarasota, FL
- Founding
- 09/1977
- Data as of
- 12/2021
- EIN
- 41-1306908
Organization Overview
Prader-Willi Syndrome Association is located in Sarasota, 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 12/2021, Prader-Willi Syndrome Association employed 18 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 12/2021, Prader-Willi Syndrome Association generated $1.7m in total revenue. The organization has seen a slow decline revenue. Over the past 7 years, revenues have fallen by an average of (1.0%) each year. All expenses for the organization totaled $1.2m during the year ending 12/2021. As we would expect to see with falling revenues, expenses have declined by (2.3%) per year over the past 7 years. You can explore the organizations financials more deeply in the financial statements section below.
Since 2015, Prader-Willi Syndrome Association has awarded 38 individual grants totaling $1,604,846. 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
2021
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
CONFERENCE FOR PROFESSIONALS AND PARENTS DESIGNED TO SHARE NEW APPROACHES IN DEALING WITH PRADER-WILLI SYNDROME.
CRISIS AND INTERVENTION TRAINING TO ASSIST IN TREATMENT AND SUPPORT.
DISTRIBUTION OF EDUCATIONAL MATERIALS AND PARENT INTERVENTION REGARDING PRADER-WILLI SYNDROME.
RESEARCH DIRECTED AT IMPROVING CURRENT TREATMENT METHODS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Paige Rivard Executive Director | Officer | 40 | $115,082 |
Pam Zambrotta Treasurer | OfficerTrustee | 5 | $0 |
Julie Doherty Secretary | OfficerTrustee | 10 | $0 |
Marguerite Rupnow Chair | OfficerTrustee | 5 | $0 |
Jeffrey Covington Director | Trustee | 3 | $0 |
Jenny Gibbons Director | Trustee | 3 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $3,935 |
| Fundraising events | $288,886 |
| Related organizations | $0 |
| Government grants | $151,100 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,012,735 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,456,656 |
| Total Program Service Revenue | $248,038 |
| Investment income | $26,755 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $7,870 |
| Net Income from Fundraising Events | -$24,774 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $4,700 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,719,245 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $69,460 |
| Grants and other assistance to domestic individuals. | $8,295 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $118,533 |
| Compensation of current officers, directors, key employees. | $7,739 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $479,523 |
| Pension plan accruals and contributions | $8,609 |
| Other employee benefits | $45,415 |
| Payroll taxes | $49,978 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $5,521 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $9,492 |
| Fees for services: Other | $52,299 |
| Advertising and promotion | $2,361 |
| Office expenses | $42,064 |
| Information technology | $68,924 |
| Royalties | $0 |
| Occupancy | $80,851 |
| Travel | $24,059 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $9,551 |
| Insurance | $7,004 |
| All other expenses | $8,793 |
| Total functional expenses | $1,238,362 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $464,239 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $65,593 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $5,000 |
| Prepaid expenses and deferred charges | $15,322 |
| Net Land, buildings, and equipment | $28,117 |
| Investments—publicly traded securities | $1,852,116 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $9,750 |
| Total assets | $2,440,137 |
| Accounts payable and accrued expenses | $51,581 |
| Grants payable | $0 |
| Deferred revenue | $2,000 |
| 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 | $53,581 |
| Net assets without donor restrictions | $1,515,879 |
| Net assets with donor restrictions | $870,677 |
| 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 | $2,440,137 |
Grants Awarded
Over the last fiscal year, Prader-Willi Syndrome Association has awarded $69,460 in support to 2 organizations.
| Grant Recipient | Amount |
|---|---|
Gainesville, FL PURPOSE: NUTRITIONAL PHASES | $44,460 |
UNIVERSITY OF SOUTH FLORIDA PURPOSE: TAMURA-DMCC | $25,000 |
Grants Recieved
Over the last fiscal year, we have identified 1 grants that Prader-Willi Syndrome Association has recieved totaling $10,000.
| Awarding Organization | Amount |
|---|---|
Sam P Alterman Family Foundation Inc Atlanta, GA PURPOSE: CHARITY | $10,000 |
Endowment Analysis
| Beg. Balance | $201,053 |
| Net Contributions | $3,126 |
| Ending Balance | $204,179 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Multiple Sclerosis Center Of Georgia Inc Atlanta, GA | $14,597,977 | $12,400,152 |
Multiple Sclerosis Foundation Inc Ft Lauderdale, FL | $9,512,588 | $5,647,701 |
Amyotrophic Lateral Sclerosis Association Tampa, FL | $2,655,654 | $4,199,844 |
Prader-Willi Syndrome Association Sarasota, FL | $2,440,137 | $1,719,245 |
Amyotrophic Lateral Sclerosis Association Birmingham, AL | $312,683 | $815,281 |
Lupus Foundation Of America Florida Chapter Inc Boynton Beach, FL | $0 | $167,207 |
Next Step Atlanta Inc Alpharetta, GA | $246,220 | $603,149 |
Facial Pain Research Foundation Inc Gainesville, FL | $1,134,914 | $724,170 |
Nextstep Orlando Inc Altamonte Springs, FL | $280,488 | $408,503 |
Miami Sci Wellness Inc Miami, FL | $626,874 | $254,167 |
Alabama Sheet Metal Joint Industry Board Inc Birmingham, AL | $640,810 | $271,630 |
Independent Living Associates Of The Muscle Shoals Area Inc Florence, AL | $407,896 | $179,197 |