2022-06-22T14:32:49-05:00 2021-12-31 521399339 HCFL 1954 GREENSPRING DR STE 305 TIMONIUM MD 21093 990 2021-01-01 521214782 IMMUNE DEFICIENCY FOUNDATION IMMU 4103216647 110 WEST ROAD SUITE 300 TOWSON MD 21204 SARAH ROSE CFO 8002964433 2022-06-21 true SARAH ROSE XXX-XX-XXXX KALMAN DANZIGER CPA P01708503 4108284446 2022-06-21 2021 2022-09-23 18:48:47Z SARAH ROSE 110 WEST ROAD TOWSON MD 21204 10233338 false X WWW.PRIMARYIMMUNE.ORG X 1980 DE 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. 17 17 48 232 0 6486028 9152968 6610 0 290140 785503 0 6782778 9938471 206197 69977 0 3555401 3562638 0 792871 2770943 4391000 6532541 8023615 250237 1914856 12389861 14287227 943863 444776 11445998 13842451 X 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. false false 3636415 17400 IDF PROVIDED EDUCATIONAL PROGRAMS FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2021, APPROXIMATELY 7,825 INDIVIDUALS ATTENDED MORE THAN 379 PRESENTATIONS. THESE INCLUDED IDF FORUMS, IDF GET CONNECTED GROUP MEETINGS, TEEN WEEK ACTIVITIES, THE IDF NATIONAL SUMMIT, RARE OF THE RARE, AND MEDICAL EXHIBITS. MORE THAN 119,650 IDF EDUCATIONAL MATERIALS WERE DISTRIBUTED. 760009 THE PRIMARY IMMUNODEFICIENCY COMMUNITY TURNS TO IDF FOR INDIVIDUAL ASSISTANCE TO ANSWER INSURANCE QUESTIONS, LOCATE A SPECIALIST IN THEIR AREA, FIND INFORMATION ABOUT TREATMENT, AND LEARN MORE ABOUT THEIR DIAGNOSIS. IDF'S PATIENT ADVOCACY SPECIALISTS FULFILLED INFORMATION REQUESTS FROM MORE THAN 3,260 INDIVIDUALS AND FAMILIES SEEKING EDUCATION, INFORMATION, AND ASSISTANCE REGARDING OVER 5,650 TOPICS/SUBJECTS. IDF WORKS THROUGHOUT THE YEAR AT THE FEDERAL AND STATE LEVEL TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES THAT IMPACT THE PI COMMUNITY. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK WORKS TO EDUCATE POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. AT IDF ADVOCACY DAY, 385 INDIVIDUALS MET WITH AND SENT MESSAGES TO MEMBERS OF CONGRESS TO ENSURE THAT PEOPLE WITH PI ARE ABLE TO LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE. 619647 10500 IN AN EFFORT 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 2 MEDICAL CONFERENCES 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. UNITED STATES IMMUNODEFICIENCY NETWORK (USIDNET) PATIENT REGISTRY, WHICH UTILIZED A NETWORK OF LEADING IMMUNOLOGISTS WHO COLLABORATE TO ADVANCE KNOWLEDGE IN THE FIELD OF PI. A KEY COMPONENT IS A PATIENT- CONSENTED REGISTRY, WHICH HAS 7,885 REGISTRANTS. 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 2021, THERE WERE 7 ABSTRACTS ACCEPTED AND FEATURED AT NATIONAL MEDICAL CONFERENCES AND 6 MANUSCRIPTS PUBLISHED IN PEER REVIEW SCIENTIFIC JOURNALS, ALL USING USIDNET DATA. 946470 42077 OTHER SERVICES TO PATIENTS AND FAMILIES 946470 42077 5962541 true true false true false false false false false true true true false false true false true false false false false false false false true false false false true true false false false false false false false false false false false false false false false false false true 35 0 true 48 true false false false false false false false false false false false false false false X 17 17 false false false false false false false true true false false true true true true true true true true false CA CO CT DC DE FL GA IL MA MD MI MN NC ND NH NJ NY OH PA RI TN VA WA WI X X X SARAH ROSE 4103216647 110 WEST ROAD TOWSON MD 21204 KATHRYN STEPHENS INTERIM CEO 40.00 0.00 X X 148075 0 0 JOHN G BOYLE FORMER CEO 40.00 0.00 X X 135164 0 6643 JOHN SEYMOUR PHD BOARD CHAIR 1.00 0.00 X X 0 0 0 TRACY A SHAW VICE CHAIR 1.00 0.00 X X 0 0 0 STEVE FIETEK FINANCE CHAI 1.00 0.00 X X 0 0 0 BRIAN N RATH SECRETARY 1.00 0.00 X X 0 0 0 RICHARD LOW JR DEVELOPMENT 1.00 0.00 X X 0 0 0 CHUCK LAGE SEROC CHAIR 1.00 0.00 X X 0 0 0 REBECCA BUCKLEY MD PAC CHAIR 1.00 0.00 X 0 0 0 KATE SULLIVAN MD PAC VICE-CHA 1.00 0.00 X 0 0 0 JASON ANGELOS TRUSTEE 1.00 0.00 X 0 0 0 TERRY HALPER TRUSTEE 1.00 0.00 X 0 0 0 JOHN SMITH TRUSTEE 1.00 0.00 X 0 0 0 AMY WALSH TRUSTEE 1.00 0.00 X 0 0 0 PETE ATHERTON TRUSTEE 1.00 0.00 X 0 0 0 JOEL BUCKBERG TRUSTEE 1.00 0.00 X 0 0 0 SONIA VOHNOUT TRUSTEE 1.00 0.00 X 0 0 0 SETH KAUFMAN TRUSTEE 1.00 0.00 X 0 0 0 SARAH ROSE CFO 40.00 0.00 X 148002 0 17980 KATHERINE ANTILLA VP EDUCATION 40.00 0.00 X 130850 0 25844 CHRISTOPHER SCALCHUNES VP RESEARCH 40.00 0.00 X 129468 0 5179 TAMMY BLACK VP OF COMMUN 40.00 0.00 X 133740 0 13052 LYNN ALBIZO VP OF PUBLIC 40.00 0.00 X 121850 0 25022 KIM BISCOE DIRECTOR OF 40.00 0.00 X 100908 0 0 1048057 93720 8 false true false BACK OFFICE THINKING LLC 790 E MARKET STREET WEST CHESTER PA 19382 492786 BRIGHTER STRATEGIES LLC 6533 ARLINGTON BLVD 2414 FALLS CHURCH VA 22042 181916 FAEGRE DRINKER BIDDLE REATH LLP 75 REMITTANCE DRIVE DEPT 6952 CHICAGO IL 606756952 174000 NEVINS ASSOCIATES 2150 WASHINGTON AVENUE SUITE 110 TOWSON MD 21204 108000 SIMPLE IT 568 OLD BACHMANS VALLEY ROAD WESTMINSTER MD 21157 100375 5 571267 2698893 5882808 9152968 286433 286433 499070 499070 499070 499070 294867 571267 294867 9938471 785503 X 69977 69977 431241 431241 2500856 1480802 620405 399649 394380 268036 71725 54619 236161 152569 51538 32054 19984 13047 5188 1749 2734595 2471031 179697 83867 136379 132731 3648 91021 48011 2555 40455 281664 193465 61226 26973 7341 3964 2587 790 108641 92365 16276 4641 4641 116831 75233 31109 10489 40921 27615 9051 4255 DUE & SUBSCRIPTIONS 251620 228701 15797 7122 SUPPLIES 198133 98623 44241 55269 STAFF DEVELOPMENT 176058 46745 129313 BANK FEES 87104 36659 15159 35286 136067 91726 23971 20370 8023615 5962541 1268203 792871 905660 689372 2356604 1849442 198385 430471 224068 167228 502609 432019 111373 70590 8580875 10801889 12896 278235 12389861 14287227 336979 404082 38633 19864 568251 20830 943863 444776 X 10795683 13249405 650315 593046 11445998 13842451 12389861 14287227 1914856 536243 -54646 X false true true true true X 7285264 5305252 8943841 6486028 9152968 37173353 7285264 5305252 8943841 6486028 9152968 37173353 17317131 19856222 285001 499810 329215 194897 286433 1595356 31510 1320 37061 69891 38838600 625314 0.51120 0.49090 X PART II, LINE 10 69,891 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 58108 167023 225131 7798484 8023615 551181 137795 470489 580081 476627 551181 2078378 3117567 277109 227766 182043 225131 912049 117622 145020 119157 137795 519594 779391 80411 67906 74996 58108 281421 5483828 699700 6183528 4962050 521778 5483828 4140560 821490 4962050 4412670 -272110 4140560 4211532 201138 4412670 1.00000 false false 502609 432019 70590 70590 EQUITY MUTUAL FUNDS 7433159 F FIXED INCOME MUTUAL FUNDS 3368730 F 10801889 CAPITAL LEASES 20830 20830 10420068 536243 536243 9883825 54646 54646 9938471 8023615 8023615 8023615 WALKS 668023 396696 271327 271327 DIY/FACEBOOK 198111 174571 23540 23540 866134 571267 294867 294867 294867 true SCHOLARSHIPS & GRANTS 197 69977 X X X false false false false false false false false false SARAH ROSE CFO 148002 17980 165982 KATHERINE ANTILLA VP EDUCATION 130850 25844 156694 FORM 990, PAGE 2, PART III, LINE 4B THE PRIMARY IMMUNODEFICIENCY COMMUNITY TURNS TO IDF FOR INDIVIDUAL ASSISTANCE TO ANSWER INSURANCE QUESTIONS, LOCATE A SPECIALIST IN THEIR AREA, FIND INFORMATION ABOUT TREATMENT, AND LEARN MORE ABOUT THEIR DIAGNOSIS. IDF'S PATIENT ADVOCACY SPECIALISTS FULFILLED INFORMATION REQUESTS FROM MORE THAN 3,260 INDIVIDUALS AND FAMILIES SEEKING EDUCATION, INFORMATION, AND ASSISTANCE REGARDING OVER 5,650 TOPICS/SUBJECTS. IDF WORKS THROUGHOUT THE YEAR AT THE FEDERAL AND STATE LEVEL TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES THAT IMPACT THE PI COMMUNITY. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK WORKS TO EDUCATE POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. AT IDF ADVOCACY DAY, 385 INDIVIDUALS MET WITH AND SENT MESSAGES TO MEMBERS OF CONGRESS TO ENSURE THAT PEOPLE WITH PI ARE ABLE TO 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 IN AN EFFORT 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 2 MEDICAL CONFERENCES 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. UNITED STATES IMMUNODEFICIENCY NETWORK (USIDNET) PATIENT REGISTRY, WHICH UTILIZED A NETWORK OF LEADING IMMUNOLOGISTS WHO COLLABORATE TO ADVANCE KNOWLEDGE IN THE FIELD OF PI. A KEY COMPONENT IS A PATIENT- CONSENTED REGISTRY, WHICH HAS 7,885 REGISTRANTS. 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 2021, THERE WERE 7 ABSTRACTS ACCEPTED AND FEATURED AT NATIONAL MEDICAL CONFERENCES AND 6 MANUSCRIPTS PUBLISHED IN PEER REVIEW SCIENTIFIC JOURNALS, ALL USING USIDNET DATA. FORM 990, PAGE 2, PART III, LINE 4D OTHER SERVICES TO PATIENTS AND FAMILIES FORM 990, PART VI THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. IN ADDITION, THE FINANCIAL STATEMENTS ARE AVAILABLE ON THE WEBSITE. FORM 990, PAGE 6, PART VI, LINE 11B THE 990 IS REVIEWED BY THE CHIEF FINANCIAL OFFICER ONCE COMPLETED BY THE AUDITORS. ONCE THE CHIEF FINANCIAL OFFICER IS SATISFIED WITH THE ACCURACY, THE 990 IS THEN PASSED ONT 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/CFO DISTRIBUTES THE STATEMENT ANNUALLY FOR SIGNATURES TO THE BOARD. THE BOARD LIAISON/CFO, WOULD DISTRIBUTE TO ANY STAFF NECESSARY. THE BOARD LIAISON/CFO 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. FOR ALL 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 TEH POSITION. IF THE SUPERVISOR APPROVES AN INCREASE, PAPERWORK IS DRAWN UP AND SUBMITTED TO THE PRESIDENT & CEO FOR APPROVAL AND IS ALSO REVIEWED BY THE EXECUTIVE COMMITTEE. 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 15B THE PRESIDENT & CEO'S COMPENSATION IS REVIEWED AND DOCUMENTED BY THE PERSONNEL 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 PERSONNEL COMMITTEE INFORMS THE PRESIDENT & CEO, HUMAN RESOURCES, AND ACCOUNTING. FOR ALL 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 TEH POSITION. IF THE SUPERVISOR APPROVES AN INCREASE, PAPERWORK IS DRAWN UP AND SUBMITTED TO THE PRESIDENT & CEO FOR APPROVAL AND IS ALSO REVIEWED BY THE PERSONNEL COMMITTEE. 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 NORTH DAKOTA, NEW HAMPSHIRE, NEW JERSEY, NEW YORK, OHIO, PENNSYLVANIA, RHODE ISLAND, TENNESSEE, VIRGINIA, WASHINGTON, 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. FORM 990, PART IX, LINE 11G OTHER FEES 2,471,031 179,697 83,867