Dystrophic Epidermolysis Bullosa Research Assn Of America Inc is located in Boulder, CO. 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 12/2023, Dystrophic Epidermolysis Bullosa Research Assn Of America Inc employed 8 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 12/2023, Dystrophic Epidermolysis Bullosa Research Assn Of America Inc generated $2.6m in total revenue. This organization has experienced exceptional growth, as over the past 5 years, it has increased revenue by an average of 10.8% each year . All expenses for the organization totaled $1.6m during the year ending 12/2023. While expenses have increased by 1.4% per year over the past 5 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
2023
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"
RESEARCH
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
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Brett Kopelan Executive Director | Officer | 40 | $283,417 |
J Alec Alexander Treasurer | OfficerTrustee | 1 | $0 |
Andrew Tavani Chair | OfficerTrustee | 1 | $0 |
Richard Gallagher Chair Emeritus | Trustee | 1 | $0 |
Robert Ryan Ph D Director | Trustee | 1 | $0 |
John Lee Secretary | OfficerTrustee | 1 | $0 |
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $0 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,877,454 |
| Noncash contributions included in lines 1a–1f | $1,128,042 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $1,877,454 |
| Total Program Service Revenue | $0 |
| Investment income | $14,772 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $0 |
| Net Income from Fundraising Events | $709,954 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $2,604,819 |
| 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. | $283,417 |
| Compensation of current officers, directors, key employees. | $10,000 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $552,799 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $130,527 |
| Payroll taxes | $62,623 |
| 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 | $115,348 |
| Advertising and promotion | $6,537 |
| Office expenses | $47,810 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $107,034 |
| Travel | $0 |
| 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 | $231 |
| Insurance | $30,348 |
| All other expenses | $79,647 |
| Total functional expenses | $1,572,705 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $632,300 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $0 |
| Accounts receivable, net | $562,161 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $439,211 |
| Prepaid expenses and deferred charges | $73,626 |
| Net Land, buildings, and equipment | $0 |
| Investments—publicly traded securities | $233,174 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $0 |
| Total assets | $1,940,472 |
| Accounts payable and accrued expenses | $199,374 |
| 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 | $199,374 |
| Net assets without donor restrictions | $1,219,594 |
| Net assets with donor restrictions | $521,504 |
| 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 | $1,940,472 |
| Organization Name | Assets | Revenue |
|---|---|---|
Dystrophic Epidermolysis Bullosa Research Assn Of America Inc Boulder, CO | $1,940,472 | $2,604,819 |
Oklahoma Project Woman Inc Tulsa, OK | $1,548,633 | $1,082,000 |
Siloam Telluride, CO | $7,076,071 | $391,417 |
Prostate Cancer Education Council Elizabeth, CO | $2,610,482 | $1,157,960 |
Fight 4 Life Inc Sandy, UT | $35,310 | $0 |
Ovarian Cancer Alliance Of Arizona Phoenix, AZ | $55,395 | $0 |
Children With Diabetes Superior, CO | $11,199 | $0 |
Western States Rhinology Education Foundation Salt Lake City, UT | $109,259 | $0 |
Las Cruces Transplant Group Las Cruces, NM | $0 | $0 |