Dystrophic Epidermolysis Bullosa Research Assn Of America Inc
- Assets
- $2.2m
- Revenue
- $1.1m
- Investments
- $250.0k
- Employees
- 12
- Location
- New York, NY
- Founding
- 07/1982
- Data as of
- 12/2021
- EIN
- 11-2519726
Organization Overview
Dystrophic Epidermolysis Bullosa Research Assn Of America Inc is located in New York, NY. The organization was established in 1982. According to its NTEE Classification (G40) the organization is classified as: Diseases of Specific Organs, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Dystrophic Epidermolysis Bullosa Research Assn Of America Inc employed 12 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Dystrophic Epidermolysis Bullosa Research Assn Of America 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 12/2021, Dystrophic Epidermolysis Bullosa Research Assn Of America Inc generated $1.1m in total revenue. This represents a relatively dramatic decline in revenue. Over the past 7 years, the organization has seen revenues fall by an average of (4.9%) each year. All expenses for the organization totaled $1.7m during the year ending 12/2021. 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
2021
Describe the Organization's Mission:
Part 3 - Line 1
DEBRA IS DEDICATED TO FINDING A CURE FOR EB THRU RESEARCH EB AFFECTS 1 OUT OF EVERY 50,000 LIVE BIRTHS IN THE U.S.
Describe the Organization's Program Activity:
Part 3 - Line 4a
PUBLIC AND PROFESSIONAL EDUCATION - EDUCATE THE PUBLIC & HEALTH PROFESSIONALS ABOUT DYSTROPHIC EPIDERMOLYSIS BULLOSA "EB"
PATIENT & FAMILY SERVICES - PROVIDE SERVICES FOR THE PEOPLE WITH EB AND THEIR FAMILIES THROUGH NEWSLETTERS, COUNSELING, PEER SUPPORT SERVICES, CONFERENCES AND SEMINARS
ADVOCACY - NETWORK WITH OTHER PROFESSIONAL ORGANIZATIONS AND MEET KEY LEGISLATORS TO INFORM THEM OF EB AND SECURE RESEARCH FUNDS
RESEARCH
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Brett Kopelan Executive Director | Officer | 40 | $260,758 |
J Alec Alexander Treasurer | OfficerTrustee | 1 | $0 |
Andrew Tavani Chair | OfficerTrustee | 1 | $0 |
John Lee Secretary | OfficerTrustee | 1 | $0 |
William Cornman Director | Trustee | 1 | $0 |
Robert Ryan Ph D Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $164,990 |
| All other contributions, gifts, grants, and similar amounts not included above | $838,646 |
| Noncash contributions included in lines 1a–1f | $0 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,003,636 |
| Total Program Service Revenue | $0 |
| Investment income | $787 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $99,416 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $1,109,789 |
| 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 | $9,000 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $260,758 |
| Compensation of current officers, directors, key employees. | $10,000 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $614,544 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $141,368 |
| Payroll taxes | $75,590 |
| 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 | $0 |
| Fees for services: Other | $109,398 |
| Advertising and promotion | $41,117 |
| Office expenses | $52,392 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $98,031 |
| Travel | $76,940 |
| 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 | $3,198 |
| Insurance | $67,742 |
| All other expenses | $24,836 |
| Total functional expenses | $1,672,683 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $451,231 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $262,765 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $505,536 |
| Prepaid expenses and deferred charges | $8,056 |
| Net Land, buildings, and equipment | $3,049 |
| Investments—publicly traded securities | $736,140 |
| Investments—other securities | $250,000 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $2,216,777 |
| Accounts payable and accrued expenses | $359,056 |
| 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 | $359,056 |
| Net assets without donor restrictions | $1,306,145 |
| Net assets with donor restrictions | $551,576 |
| 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 | $2,216,777 |
Grants Recieved
Over the last fiscal year, we have identified 10 grants that Dystrophic Epidermolysis Bullosa Research Assn Of America Inc has recieved totaling $93,019.
| Awarding Organization | Amount |
|---|---|
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $47,471 |
Chive Charities Austin, TX PURPOSE: MEDICAL AND DISABILITY ASSISTANCE | $10,000 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $9,000 |
Americas Charities Chantilly, VA PURPOSE: GENERAL SUPPORT | $6,845 |
Rw Veit Family Foundation Wilmington, DE PURPOSE: GENERAL & UNRESTRICTED | $5,500 |
Amazonsmile Foundation Seattle, WA PURPOSE: GENERAL SUPPORT | $5,386 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
National Foundation For Celiac Awareness Ambler, PA | $4,645,706 | $2,656,405 |
Dystrophic Epidermolysis Bullosa Research Assn Of America Inc New York, NY | $2,216,777 | $1,109,789 |
Histiocytosis Association Inc Pitman, NJ | $2,387,632 | $1,416,505 |
National Renal Administrators Association Mount Royal, NJ | $21,861,692 | $2,274,258 |
Impact Melanoma Inc Concord, MA | $807,445 | $1,254,518 |
Pennsylvania Workforce Development Association Camp Hill, PA | $576,596 | $904,674 |
Lets Win Pancreatic Cancer Foundation New York, NY | $1,768,476 | $1,270,755 |
Foundation For Ichthyosis And Related Skin Types Lansdale, PA | $2,615,716 | $1,013,506 |
Community Liver Alliance Pittsburgh, PA | $995,592 | $709,800 |
Halachic Organ Donor Society Inc New York, NY | $197,834 | $485,319 |
Advancing Innovation In Dermatology Inc Mendham, NJ | $1,825,386 | $432,441 |
New England Section American Uroligical Association Inc Beverly, MA | $1,931,127 | $525,791 |