2024-06-27T15:27:10-04:00 2023-12-31 251644159 BROWN PLUS 7420 HAYWARD ROAD SUITE 101 FREDERICK MD 21702 990 2023-01-01 521214782 IMMUNE DEFICIENCY FOUNDATION IMMU 4103216647 7550 TEAGUE ROAD SUITE 220 HANOVER MD 21706 JOREY BERRY PRESIDENT & CEO 4103216647 2024-06-24 true JOREY BERRY XXX-XX-XXXX true WANDA K LYNN CPA P00726749 3016969449 2024-06-24 2023 2023-04-26 12:10:37Z JOREY BERRY 7550 TEAGUE ROAD SUITE 220 HANOVER MD 21076 19531404 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 13 45 602 0 8654145 8657179 68746 13090 129557 315588 0 8852448 8985857 158570 244104 0 4283731 4417931 0 1144802 3494170 2740219 7936471 7402254 915977 1583603 14567941 17355217 1525931 1438468 13042010 15916749 X THE IMMUNE DEFICIENCY FOUNDATION (IDF) IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCY THROUGH FOSTERING A COMMUNITY EMPOWERED BY ADVOCACY, EDUCATION, AND RESEARCH. IDF SEEKS TO ENSURE THAT EVERYONE IN THE U.S. AFFECTED BY PI HAS A FULLY INFORMED UNDERSTANDING OF THE PI DIAGNOSIS THAT AFFECTS THEM, ALL AVAILABLE TREATMENT OPTIONS, THE EXPECTED STANDARD OF CARE, AND ALL OF THEIR OPPORTUNITIES FOR CONNECTION AND SUPPORT WITHIN THE PI COMMUNITY. false false 3050669 15704 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. 956777 500 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. 1075835 227900 12100 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. 990 990 5083281 true true false true false false false false false true true false false true true false true false false false false false false false false false false true true true false false false false false false false false true false false false false false false false false true 26 0 true 45 true false false false false false false false false false false false false X 14 13 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 VA WA WV WI X X X SARAH ROSE 4103216647 7550 TEAGUE ROAD HANOVER MD 21076 JOREY BERRY PRESIDENT & 40.00 X X 268604 0 31984 SARAH ROSE CFO 40.00 X 140396 0 29011 BRIAN LLOYD CTO 40.00 X 136376 0 31592 AIMEE SIMPSON VP INSTITUTI 40.00 X 145327 0 17779 TAMMY BLACK VP 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21209 CONSULTING 130271 NEVINS & ASSOCIATES 215 WASHINGTON AVENUE SUITE 100 TOWSON MD 21204 CONSULTING 108000 5 322570 8334609 43157 8657179 SURVEY INCOME 541700 12100 12100 OTHER INCOME 541900 990 990 13090 398737 398737 10462398 10545547 -83149 -83149 -83149 8985857 13090 315588 217750 217750 26354 26354 469994 199092 218273 52629 3193169 2115135 603461 474573 115337 74135 25552 15650 365402 231927 84043 49432 274029 173901 59537 40591 34623 32148 713 1762 29158 27073 601 1484 199969 199969 63532 44772 8424 10336 675274 612705 17999 44570 27398 9894 17504 118817 77784 24934 16099 155607 144481 3206 7920 102983 66208 21461 15314 109661 78976 7467 23218 455521 317498 20506 117517 64 64 168728 110002 34272 24454 37680 26429 6264 4987 DUES & SUBSCRIPTIONS 186981 132447 21723 32811 PRINTING & COPYING 115770 73731 447 41592 BANK FEES 114839 8739 8821 97279 POSTAGE & SHIPPING 90796 55390 35406 52818 26741 6403 19674 7402254 5083281 1174171 1144802 1250364 1346127 1536582 2374122 58271 79899 8920 18506 188115 281164 249760 45236 210537 204524 10175769 11924537 196186 214663 943197 911675 14567941 17355217 306894 308172 63962 26695 1155075 1103601 1525931 1438468 X 11721888 14001757 1320122 1914992 13042010 15916749 14567941 17355217 1583603 1291136 X false true X true false X 8943841 6486028 9152968 8654145 8657179 41894161 8943841 6486028 9152968 8654145 8657179 41894161 18644804 23249357 329215 194897 286433 299863 398737 1509145 37061 37061 43440367 275407 0.53520 0.54110 X PART II, LINE 10 OTHER INCOME 37,061 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 104284 253726 358010 7044244 7402254 520113 130028 476627 551181 546808 520113 2094729 3142094 182043 225131 364371 358010 1129555 119157 137795 136702 130028 523682 785523 74996 58108 174631 104284 412019 6198759 975048 7173807 6183528 1114253 -1099022 6198759 5483828 699700 6183528 4962050 521778 5483828 4140560 821490 4962050 1.00000 false false 213957 17426 196531 35803 27810 7993 204524 RIGHT OF USE ASSET 867045 SECURITY DEPOSIT 44630 911675 OPERATING LEASES 1103601 1103601 10213461 1291136 1291136 8922325 63532 63532 8985857 7338722 7338722 63532 63532 7402254 true THE REGENTS OF THE UNIVERSITY OF CALIFORNIA LOS ANGELES 10920 WILSHIRE BLVD SUITE 620 LOS ANGELES CA 90094 956006143 501C3 50000 RESEARCH JOHNS HOPKINS UNIVERSITY 3910 KESWICK ROAD STE N4327B BALTIMORE MD 21211 520595110 501C3 50000 RESEARCH STANFORD UNIVERSITY 450 JANE STANFORD WAY STANFORD CA 94305 941156365 501C3 45000 RESEARCH YALE UNIVERSITY 333 CEDAR STREET 100 SHM NEW HAVEN CT 06510 060646973 501C3 30000 RESEARCH CHILDREN'S NATIONAL MEDICAL CENTER 111 MICHIGAN AVE NW WASHINGTON DC 20010 521640403 501C3 17500 RESEARCH CLINICAL IMMUNOLOGY SOCIETY 555 EAST WELLS STREET SUITE 1100 MILWAUKEE WI 532023823 521469030 501C3 15000 MEETING PARTICIPATIO BAYLOR COLLEGE OF MEDICINE 1 BAYLOR PLAZA HOUSTON TX 77030 741613878 501C3 10000 RESEARCH 7 HONORARIA 81 23954 RESEARCH STIPEND 15 2400 SCHEDULE I, PAGE 1, PART I, LINE 2 EACH GRANT APPLICATION IS REVIEWED BY A COMMITTEE USING NIH SCORING CRITERIA. 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 false false false false false false false false JOREY BERRY PRESIDENT & CEO 223104 45500 9575 22409 300588 SARAH ROSE CFO 140396 5809 23202 169407 BRIAN LLOYD CTO 136376 5590 26002 167968 AIMEE SIMPSON VP INSTITUTIONAL ADV 145327 5809 11970 163106 TAMMY BLACK VP COMMUNICATIONS 142074 5665 12938 160677 LYNN ALBIZO VP PUBLIC POLICY 127911 5201 21902 155014 X 4 43157 QUOTED MARKET PRICE false true false FORM 990 - ORGANIZATION'S MISSION THE IMMUNE DEFICIENCY FOUNDATION (IDF) IMPROVES THE DIAGNOSIS, TREATMENT, AND QUALITY OF LIFE OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCY THROUGH FOSTERING A COMMUNITY EMPOWERED BY ADVOCACY, EDUCATION, AND RESEARCH. IDF SEEKS TO ENSURE THAT EVERYONE IN THE U.S. AFFECTED BY PI HAS A FULLY INFORMED UNDERSTANDING OF THE PI DIAGNOSIS THAT AFFECTS THEM, ALL AVAILABLE TREATMENT OPTIONS, THE EXPECTED STANDARD OF CARE, AND ALL OF THEIR OPPORTUNITIES FOR CONNECTION AND SUPPORT WITHIN THE PI COMMUNITY. FORM 990, PAGE 2, PART III, LINE 4B 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. FORM 990, PAGE 2, PART III, LINE 4C 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. 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 THE IDF OFFICE. 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 PRESIDENT & CEO'S ATTENTION IS THERE ARE CONFLICTS. ANY RESTRICTIONS, IF NECESSARY, WOULD BE MADE AT HIS LEVEL OR ABOVE, 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 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. REVIEW OF WEBSITES SUCH AS SALARY.COM AND/OR REVIEW OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK 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, 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.