2026-07-20T10:35:04-04:00 2025-12-31 251644159 BROWN PLUS 7420 HAYWARD ROAD SUITE 101 FREDERICK MD 21702 990 2025-01-01 521214782 IMMUNE DEFICIENCY FOUNDATION IMMU 4103216647 7550 TEAGUE ROAD SUITE 220 HANOVER MD 21076 JOREY BERRY PRESIDENT & CEO 4103216647 2026-07-13 true RYAN P HARSHMAN CPA P01756011 3016969449 2026-07-13 2025 2025-03-06 01:10:19Z JOREY BERRY 7550 TEAGUE ROAD SUITE 220 HANOVER MD 21076 17561718 false X WWW.PRIMARYIMMUNE.ORG X 1980 DE 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. 14 14 46 603 0 9567648 10651366 15870 45656 548184 707576 0 10131702 11404598 564056 609595 0 4787765 5003142 0 963421 4260977 2764332 9612798 8377069 518904 3027529 18802131 23311148 1362276 1453460 17439855 21857688 X THE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE FOR EVERY PERSON AFFECTED BY PRIMARY IMMUNODEFICIENCY. WE FOSTER A COMMUNITY THAT IS CONNECTED, ENGAGED, AND EMPOWERED THROUGH ADVOCACY, EDUCATION, AND RESEARCH. false false 2949291 355206 IMMUNE DEFICIENCY FOUNDATION PROVIDED EDUCATIONAL PROGRAMS AND SERVICES FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2025, APPROXIMATELY 34,030 INDIVIDUALS WERE PROVIDED WITH EDUCATION AND SUPPORT THROUGH PUBLICATIONS, WEBINARS, VIDEOS AND PODCAST EPISODES, GET CONNECTED GROUP MEETINGS, AND TEEN AND YOUNG ADULT ACTIVITIES. THERE WERE 2 MILLION WEBSITE VISITORS, OVER 480,000 VIEWS ON YOUTUBE AND 2,600 COMPROMISED DOCUMENTARY SCREENING REQUESTS. SINCE THE LAUNCH, MORE THAN 14,000 PEOPLE HAVE UTILIZED THE IMMUNE SYSTEM SELF-ASSESSMENT TOOL ON OUR WEBSITE. 1555717 THE PI COMMUNITY RELIES ON 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. OUR PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 2,200 QUESTIONS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. THE ORGANIZATION ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES SUCH AS VACCINE ACCESS AND INSURANCE COVERAGE CHALLENGES, THAT IMPACT THOSE WHO ARE IMMUNOCOMPROMISED. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK, INCLUDING HEALTH ACCESS ADVOCATE VOLUNTEERS, INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2025, THERE WERE MORE THAN 3,650 LETTERS AND MESSAGES SENT TO LEGISLATORS AND EXECUTIVE OFFICIALS TO ENSURE THAT PEOPLE WITH PI CAN LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE. 1363676 254139 38600 TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, THERE ARE SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING ATTENDING FOURTEEN MEDICAL CONFERENCES, PROVIDING INFORMATION, EDUCATION AND RESOURCES TO OVER 14,000 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IN 2025 WE LAUNCHED AN ACCREDITED CONTINUING MEDICAL EDUCATION (CME) PROGRAM TO EQUIP HEALTHCARE PROFESSIONALS WITH EDUCATION AND STRATEGIES FOR EARLY PI DETECTION, PERSONALIZED CARE AND OVERCOMING ACCESS BARRIERS. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2025, TOTALING OVER 200,000. 7056 7056 5868684 true true false true false false false false false true true false false false true false true false false false false false false false false false false true true true false false false false false false false false false false false false false false false false false true 19 0 true 46 true false false false false false false false false false false false false X 14 14 false false false false false false false true true false false true true true true true true true true false AL AK AR CA CO CT DE DC FL GA HI IL KS KY ME MD MA MI MN MS NV NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI X X X SARAH ROSE 4103216647 7550 TEAGUE ROAD HANOVER MD 21076 JOREY BERRY PRESIDENT & 40.00 X 335604 0 56876 AIMEE SIMPSON CHIEF DEV. 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ONCE THE GRANT IS AWARDED, A 6-MONTH FINANCIAL AND PROGRESS REPORT IS DUE AS IS A 12-MONTH FINAL REPORT, WITH FINAL DELIVERABLES/ABSTRACT OR PUBLICATION DUE WITHIN 2 YEARS. X X X X false true false false false false false false false JOREY BERRY PRESIDENT & CEO 250826 84778 36000 20876 392480 AIMEE SIMPSON CHIEF DEV. OFFICER 159051 3100 6603 15669 184423 SARAH ROSE CFO 151456 2980 6476 20445 181357 TAMMY BLACK CHIEF COMM. OFFICER 155050 2940 6353 14829 179172 BRIAN LLOYD CTO 143005 2880 6080 24833 176798 LYNN ALBIZO PUB. POLICY OFFICER 146185 2800 5992 15940 170917 ALISSA CREAMER DIR OF EDU & COM SVC 136846 2600 5815 18697 163958 SCHEDULE J, PAGE 1, PART I, LINE 4 JOREY BERRY 0 25,500 0 SCHEDULE J, PART III AT PRESENT, ONLY THE CEO PARTICIPATES IN THE NONQUALIFIED DEFERRED COMPENSATION PLAN. ELIGIBILITY MAY BE EXTENDED TO OTHER MANAGEMENT OR HIGHLY COMPENSATED EMPLOYEES. THE ELIGIBLE EMPLOYEE(S) WOULD BE DETERMINED BY THE BOARD OR A COMMITTEE OF THE BOARD IN CONJUNCTION WITH THE PRESIDENT/CEO. THE POTENTIAL CONTRIBUTION AMOUNT IS DETERMIEND JUST PRIOR TO EACH BUDGET YEAR BY THE BOARD/BOARD COMMITTEE AND VOTED ON WITHIN THE BUDGET APPROVAL. AT THE END OF THAT YEAR, THE BOARD OR COMMITTEE DETERMINES THE EXACT AMOUNT TO ALLOW AND THAT AMOUNT IS TRANSFERRED TO THE PARTICIPANT'S ACCOUNT SHORTLY THEREAFTER. FORM 990 - ORGANIZATION'S MISSION THE IMMUNE DEFICIENCY FOUNDATION IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE FOR EVERY PERSON AFFECTED BY PRIMARY IMMUNODEFICIENCY. WE FOSTER A COMMUNITY THAT IS CONNECTED, ENGAGED, AND EMPOWERED THROUGH ADVOCACY, EDUCATION, AND RESEARCH. FORM 990, PAGE 2, PART III, LINE 4B THE PI COMMUNITY RELIES ON 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. OUR PATIENT ADVOCACY SPECIALISTS PROVIDED ANSWERS TO OVER 2,200 QUESTIONS FROM INDIVIDUALS SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. THE ORGANIZATION ALSO WORKS AT THE FEDERAL AND STATE LEVELS TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES SUCH AS VACCINE ACCESS AND INSURANCE COVERAGE CHALLENGES, THAT IMPACT THOSE WHO ARE IMMUNOCOMPROMISED. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK, INCLUDING HEALTH ACCESS ADVOCATE VOLUNTEERS, INFORM POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. IN 2025, THERE WERE MORE THAN 3,650 LETTERS AND MESSAGES SENT TO LEGISLATORS AND EXECUTIVE OFFICIALS TO ENSURE THAT PEOPLE WITH PI CAN LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE. FORM 990, PAGE 2, PART III, LINE 4C TO IMPROVE THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF THOSE AFFECTED BY PI, THERE ARE SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING ATTENDING FOURTEEN MEDICAL CONFERENCES, PROVIDING INFORMATION, EDUCATION AND RESOURCES TO OVER 14,000 HEALTHCARE PROFESSIONALS, AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS CLINICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. IN 2025 WE LAUNCHED AN ACCREDITED CONTINUING MEDICAL EDUCATION (CME) PROGRAM TO EQUIP HEALTHCARE PROFESSIONALS WITH EDUCATION AND STRATEGIES FOR EARLY PI DETECTION, PERSONALIZED CARE AND OVERCOMING ACCESS BARRIERS. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE RESEARCH GRANT PROGRAM FUNDED FOUR RESEARCH GRANTS FOR PI RELATED RESEARCH IN 2025, TOTALING OVER 200,000. FORM 990, PAGE 6, PART VI, LINE 11B THE 990 IS REVIEWED BY THE CHIEF FINANCIAL OFFICER ONCE COMPLETED BY THE OUTSIDE CPA FIRM. ONCE THE CHIEF FINANCIAL OFFICER IS SATISFIED WITH THE ACCURACY, THE 990 IS THEN PASSED ON TO THE PRESIDENT & CEO FOR REVIEW. AFTER THAT LEVEL OF REVIEW IS COMPLETE, IT IS THEN PASSED ON TO THE FINANCE COMMITTEE FOR APPROVAL. ONCE THAT HAPPENS IT IS REVIEWED AND ONCE ACCURATE, APPROVED BY THE BOARD OF TRUSTEES. FORM 990, PAGE 6, PART VI, LINE 12C EACH YEAR IDF REQUESTS THAT ALL BOARD OF TRUSTEE MEMBERS AND STAFF COMPLETE A CONFLICT OF INTEREST STATEMENT DISCLOSING ANY POTENTIAL CONFLICT THAT MAY EXIST. THESE ARE KEPT ON FILE IN A DIGITAL FILE. THE BOARD LIAISON/HR DISTRIBUTES THE STATEMENT ANNUALLY FOR SIGNATURES TO THE BOARD. THE BOARD LIAISON/HR, WOULD DISTRIBUTE TO ANY STAFF NECESSARY. THE BOARD LIAISON/HR WOULD REVIEW AND WOULD BRING IT TO THE EXECUTIVE COMMITTEE AND BOARD OF TRUSTEES IF THERE ARE CONFLICTS. ANY RESTRICTIONS, IF NECESSARY, WOULD BE MADE AT THE BOARD OF TRUSTEE OR PRESIDENT/CEO LEVEL, DEPENDING ON WHO/WHAT THE CONFLICT IS. FORM 990, PAGE 6, PART VI, LINE 15A THE PRESIDENT & CEO'S COMPENSATION IS REVIEWED AND DOCUMENTED BY THE EXECUTIVE COMMITTEE. THE COMMITTEE REVIEWS WEBSITES SUCH AS SALARY.COM AND/OR REVIEWS OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK, OR THE NATIONAL HEALTH COUNCILS COMPENSATION STUDY TO DETERMINE THE CORRECT SALARY FOR THE POSITION. THE COMPENSATION IS PRESENTED AND APPROVED BY THE FULL BOARD. THE EXECUTIVE COMMITTEE INFORMS THE PRESIDENT & CEO, HUMAN RESOURCES, AND ACCOUNTING. FORM 990, PAGE 6, PART VI, LINE 15B FOR ALL KEY EMPLOYEES, AN ANNUAL REVIEW IS CONDUCTED BY THE EMPLOYEE'S SUPERVISOR. BASED ON THIS REVIEW, IT IS DETERMINED IF THE PERSON GETS AN ANNUAL INCREASE BEYOND THE COST OF LIVING (IF ANY ADJUSTMENT FOR COL IS GIVEN). REVIEW OF WEBSITES SUCH AS SALARY.COM AND/OR REVIEW OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK OR THE NATIONAL HEALTH COUNCILS COMPENSATION STUDY HELPS DETERMINE THE CORRECT SALARY FOR THE POSITION. IF THE SUPERVISOR APPROVES AN INCREASE, PAPERWORK IS DRAWN UP AND SUBMITTED TO THE PRESIDENT & CEO FOR APPROVAL. ONCE APPROVAL IS COMPLETE, HUMAN RESOURCES AND ACCOUNTING ARE INFORMED OF THE INCREASE. THE EMPLOYEE IS NOTIFIED AS WELL. FORM 990, PAGE 6, PART VI, LINE 17 KENTUCKY, MAINE, MARYLAND, MASSACHUSETTS, MICHIGAN, MINNESOTA, MISSISSIPPI, NEVADA, NEW HAMPSHIRE, NEW JERSEY, NEW MEXICO, NEW YORK, NORTH CAROLINA, NORTH DAKOTA, OHIO, OKLAHOMA, OREGON, PENNSYLVANIA, RHODE ISLAND, SOUTH CAROLINA, TENNESSEE, UTAH, VIRGINIA, WASHINGTON, WEST VIRGINIA, WISCONSIN FORM 990, PAGE 6, PART VI, LINE 19 THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. IN ADDITION, THE FINANCIAL STATEMENTS ARE AVAILABLE ON THE WEBSITE.