Gorlin Syndrome Alliance
- Assets
- $391.0k
- Revenue
- $503.4k
- Investments
- $0.0
- Employees
- 3
- Location
- Reading, PA
- Founding
- 05/2000
- Data as of
- 12/2022
- EIN
- 34-1915691
Organization Overview
Gorlin Syndrome Alliance is located in Reading, PA. The organization was established in 2000. According to its NTEE Classification (G80) the organization is classified as: Specifically Named Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2022, Gorlin Syndrome Alliance employed 3 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Gorlin Syndrome Alliance 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 12/2022, Gorlin Syndrome Alliance generated $503.4k in total revenue. This represents relatively stable growth, over the past 8 years the organization has increased revenue by an average of 9.2% each year. All expenses for the organization totaled $302.3k during the year ending 12/2022. While expenses have increased by 7.2% 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.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2022
Describe the Organization's Mission:
Part 3 - Line 1
TO THOUGHTFULLY SUPPORT, COMPREHENSIVELY EDUCATE, AND AGGRESSIVELY SEEK THE BEST TREATMENTS AND A CURE FOR THOSE AFFECTED BY GORLIN SYNDROME.
Describe the Organization's Program Activity:
Part 3 - Line 4a
PROGRAM SERVICES INCLUDE PROVIDING INFORMATION, SUPPORT, AND PARTICIPATION IN RESEARCH. INFORMATION: EXPANDED THE WEBSITE LIBRARY OF ARTICLES, CONDUCTED EDUCATIONAL WEBINARS AND TOWN HALL MEETINGS, PUBLISHED VOICE OF THE PATIENT REPORT FROM THE EXTERNALLY LED-PATIENT FOCUSED DRUG DEVELOPMENT MEETING WITH THE FDA. SUPPORT: CONTINUED / EXPANDED VIRTUAL COMMUNITY GROUP MEETINGS, SEVEN IN-PERSON REGIONAL GATHERINGS WITH EXECUTIVE DIRECTOR, ANNOUNCED PLANS FOR 2023 NATIONAL IN-PERSON CONFERENCE. RESEARCH: ACCELERATED RESEARCH BY CONTINUING TO ENROLL PEOPLE IN PATIENT REGISTRY, SUPPORTED CLINICAL TRIAL RECRUITMENT, LAUNCHED REQUEST FOR APPLICATIONS FOR PATIENT-LED RESEARCH GRANT PROGRAM.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Meredith Weiss President | OfficerTrustee | 4 | $0 |
Stacy Bissell Vice President | OfficerTrustee | 4 | $0 |
Beth Spiegel Treasurer | OfficerTrustee | 1 | $0 |
Roni Rubenstein Secretary | OfficerTrustee | 1 | $0 |
Dr Elena Hawryluk Director | Trustee | 1 | $0 |
Dr Jim Swift Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $323 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $5,015 |
| All other contributions, gifts, grants, and similar amounts not included above | $496,489 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $501,827 |
| Total Program Service Revenue | $1,561 |
| Investment income | $0 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $503,388 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $0 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $94,756 |
| Compensation of current officers, directors, key employees. | $18,003 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $38,077 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $9,111 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $0 |
| Fees for services: Accounting | $10,265 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $49,560 |
| Advertising and promotion | $900 |
| Office expenses | $5,983 |
| Information technology | $8,298 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $4,936 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $33,303 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $592 |
| Insurance | $2,667 |
| All other expenses | $43,878 |
| Total functional expenses | $302,326 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $257,567 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $132,000 |
| 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 | $0 |
| Net Land, buildings, and equipment | $1,447 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $391,014 |
| Accounts payable and accrued expenses | $3,432 |
| 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 | $3,432 |
| Net assets without donor restrictions | $43,582 |
| Net assets with donor restrictions | $344,000 |
| 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 | $391,014 |
Grants Awarded
Over the last fiscal year, Gorlin Syndrome Alliance has awarded $29,353 in support to 3 organizations.
| Grant Recipient | Amount |
|---|---|
UNIVERSITY OF ILLINOIS PURPOSE: RESEARCH | $5,000 |
SOCIETY FOR PEDIATRIC DERMATOLOGY PURPOSE: RESEARCH | $15,000 |
GENETIC ALLIANCE PURPOSE: RESEARCH | $9,353 |