Immune Deficiency Foundation
- Assets
- $17.4m
- Revenue
- $9.0m
- Investments
- $0.0
- Employees
- 45
- Location
- Hanover, MD
- Founding
- 04/1986
- Data as of
- 12/2023
- EIN
- 52-1214782
Organization Overview
Immune Deficiency Foundation is located in Hanover, MD. The organization was established in 1986. As of 12/2023, Immune Deficiency Foundation employed 45 individuals. This organization is the central organization for a national or regional group of organizations. Immune Deficiency Foundation 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, Immune Deficiency Foundation generated $9.0m in total revenue. This represents relatively stable growth, over the past 9 years the organization has increased revenue by an average of 1.4% each year. All expenses for the organization totaled $7.4m during the year ending 12/2023. You can explore the organizations financials more deeply in the financial statements section below.
Since 2022, Immune Deficiency Foundation has awarded 12 individual grants totaling $353,263. 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
THE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCY THROUGH FOSTERING A COMMUNITY EMPOWERED BY ADVOCACY, EDUCATION, AND RESEARCH.
Describe the Organization's Program Activity:
Part 3 - Line 4a
IMMUNE DEFICIENCY FOUNDATION (IDF) PROVIDED EDUCATIONAL PROGRAMS FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2023, APPROXIMATELY 30,320 INDIVIDUALS WERE SUPPORTED AND HELPED BY ATTENDING OR LISTENING TO MORE THAN 360 PRESENTATIONS AT NO ADDITIONAL COST TO THEM. THESE INCLUDED EDUCATION SESSIONS, IDF GET CONNECTED GROUP MEETINGS, TEEN AND YOUNG ADULT ACTIVITIES, THE IDF PI CONFERENCE, AND PODCAST EPISODES. MORE THAN 822,000 USERS ACCESSED THE IDF WEBSITE FOR INFORMATION AND SUPPORT.
THE PI COMMUNITY TURNS TO IDF FOR INDIVIDUAL ASSISTANCE INCLUDING BUT NOT LIMITED TO ANSWERING INSURANCE QUESTIONS, LOCATING A SPECIALIST IN THEIR AREA, FINDING TREATMENT INFORMATION, AND LEARNING MORE ABOUT THEIR DIAGNOSIS. IDF'S PATIENT ADVOCACY SPECIALISTS FULFILLED INFORMATION REQUESTS FROM MORE THAN 1,665 INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. IDF WORKS THROUGHOUT THE YEAR AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES THAT IMPACT THE PI COMMUNITY. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK WORKS TO INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2023, WITH SUPPORT FROM IDF, LEGISLATION WAS REINTRODUCED TO BAN COPAY ACCUMULATORS FEDERALLY BY A BILL IN THE U.S. HOUSE OF REPRESENTATIVES. AT IDF ADVOCACY DAY, 243 INDIVIDUALS MET WITH AND SENT MESSAGES TO MEMBERS OF CONGRESS TO ENSURE THAT PEOPLE WITH PI CAN LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE.
TO IMPROVE THE DIAGNOSIS, TREATMENT, AND CARE OF THOSE AFFECTED BY PI, IDF HAS SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING EXHIBITING AT NINE MEDICAL CONFERENCES, PROVIDING INFORMATION AND RESOURCES TO OVER 3,195 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS PHYSICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST ABOUT PATIENT-SPECIFIC QUESTIONS TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IDF CONDUCTS NATIONAL SURVEYS AND FOCUS GROUPS OF PATIENTS, PHYSICIANS, AND OTHER HEALTHCARE PROFESSIONALS, BUILDING A COLLECTION OF QUANTIFIABLE DATA RELATED TO PRIMARY IMMUNODEFICIENCIES. IN 2023, OVER 2,000 INDIVIDUALS PARTICIPATED IN TWO IDF PATIENT SURVEYS TO GATHER DATA ON THE PI EXPERIENCE SINCE NO FEDERALLY FUNDED HEALTH SURVEYS IN THE U.S. COLLECT INFORMATION ON PI. THERE WERE THREE ABSTRACTS AND FOUR PUBLISHED MANUSCRIPTS ALL USING USIDNET DATA. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED FIVE RESEARCH GRANTS IN 2023 TOTALING OVER 192,000.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Jorey Berry President & | OfficerTrustee | 40 | $268,604 |
Sarah Rose CFO | Officer | 40 | $140,396 |
Brian Lloyd Cto | 40 | $136,376 | |
Aimee Simpson VP Instituti | 40 | $145,327 | |
Tammy Black VP Communica | 40 | $142,074 | |
Lynn Albizo VP Public Po | 40 | $127,911 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
The Regents Of The University Of California San Francisco Consulting | 12/30/23 | $301,116 |
Jpl Consulting | 12/30/23 | $149,264 |
Faegre Drinker Biddle & Reath Llp Public Policy | 12/30/23 | $166,051 |
The Mt Royal Printing Company Consulting | 12/30/23 | $130,271 |
Nevins & Associates Consulting | 12/30/23 | $108,000 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $0 |
| Related organizations | $0 |
| Government grants | $322,570 |
| All other contributions, gifts, grants, and similar amounts not included above | $8,334,609 |
| Noncash contributions included in lines 1a–1f | $43,157 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $8,657,179 |
| Total Program Service Revenue | $13,090 |
| Investment income | $398,737 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$83,149 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $8,985,857 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $217,750 |
| Grants and other assistance to domestic individuals. | $26,354 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $469,994 |
| Compensation of current officers, directors, key employees. | $218,273 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $3,193,169 |
| Pension plan accruals and contributions | $115,337 |
| Other employee benefits | $365,402 |
| Payroll taxes | $274,029 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $34,623 |
| Fees for services: Accounting | $29,158 |
| Fees for services: Lobbying | $199,969 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $63,532 |
| Fees for services: Other | $675,274 |
| Advertising and promotion | $27,398 |
| Office expenses | $118,817 |
| Information technology | $155,607 |
| Royalties | $0 |
| Occupancy | $102,983 |
| Travel | $109,661 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $455,521 |
| Interest | $64 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $168,728 |
| Insurance | $37,680 |
| All other expenses | $52,818 |
| Total functional expenses | $7,402,254 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $1,346,127 |
| Savings and temporary cash investments | $2,374,122 |
| Pledges and grants receivable | $79,899 |
| Accounts receivable, net | $18,506 |
| 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 | $281,164 |
| Net Land, buildings, and equipment | $204,524 |
| Investments—publicly traded securities | $11,924,537 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $214,663 |
| Other assets | $911,675 |
| Total assets | $17,355,217 |
| Accounts payable and accrued expenses | $308,172 |
| Grants payable | $0 |
| Deferred revenue | $26,695 |
| 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 | $1,103,601 |
| Total liabilities | $1,438,468 |
| Net assets without donor restrictions | $14,001,757 |
| Net assets with donor restrictions | $1,914,992 |
| 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 | $17,355,217 |
Grants Awarded
Over the last fiscal year, Immune Deficiency Foundation has awarded $217,500 in support to 7 organizations.
| Grant Recipient | Amount |
|---|---|
THE REGENTS OF THE UNIVERSITY OFCALIFORNIA LOS ANGELES PURPOSE: RESEARCH | $50,000 |
JOHNS HOPKINS UNIVERSITY PURPOSE: RESEARCH | $50,000 |
STANFORD UNIVERSITY PURPOSE: RESEARCH | $45,000 |
YALE UNIVERSITY PURPOSE: RESEARCH | $30,000 |
CHILDREN'S NATIONAL MEDICAL CENTER PURPOSE: RESEARCH | $17,500 |
CLINICAL IMMUNOLOGY SOCIETY PURPOSE: MEETING PARTICIPATIO | $15,000 |