2021-07-27T09:44:41-05:00 2020-12-31 521399339 HCFL 1104 KENILWORTH DRIVE SUITE 300 TOWSON MD 212043102 990 2020-01-01 521214782 IMMUNE DEFICIENCY FOUNDATION IMMU 4103216647 110 WEST ROAD SUITE 300 TOWSON MD 21204 SARAH ROSE CFO 8002964433 2021-07-11 true SARAH ROSE XXX-XX-XXXX KIM MUSTARD CPA P10793017 4108284446 2021-07-26 2020 2022-09-23 18:48:47Z SARAH ROSE 110 WEST ROAD TOWSON MD 21204 7106615 false X WWW.PRIMARYIMMUNE.ORG X 1980 DE U.S. ORGANIZATION DEDICATED TO IMPROVING LIVES OF PEOPLE AFFECTED BY PRIMARY IMMUNODEFICIENCIES 16 16 41 483 0 8943841 6486028 149900 6610 329215 290140 37061 0 9460017 6782778 218891 206197 0 3386950 3555401 0 812140 4995771 2770943 8601612 6532541 858405 250237 11518997 12389861 915547 943863 10603450 11445998 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 2658949 2136155 IDF PROVIDED EDUCATIONAL PROGRAMS FOR PATIENTS AND FAMILIES LIVING WITH PRIMARY IMMUNODEFICIENCIES (PI). IN 2020, APPROXIMATELY 9,019 INDIVIDUALS ATTENDED MORE THAN 368 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 165,482 IDF EDUCATIONAL MATERIALS WERE DISTRIBUTED AND IDF'S ONLINE COVID-19 PORTAL WAS VISITED NEARLY 100,000 TIMES. 506743 635611 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 MORE THAN 9,765 REQUESTS FROM INDIVIDUALS AND FAMILIES SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. IDF FILLED 399 REQUESTS TO LOCATE A SPECIALIST; THE MOST COMMON INQUIRY FROM CONSTITUENTS. 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, 199 INDIVIDUALS MET WITH 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. 958152 206197 411522 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 7 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. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED 7 RESEARCH GRANTS IN 2020. IDF EPHR, AN ONLINE PERSONAL HEALTH RECORD FOR 4,733 INDIVIDUALS WITH PI IS AN ONLINE TOOL THAT HELPS PATIENTS TAKE CHARGE OF THEIR HEALTH AND MANAGE THEIR INFORMATION IN ONE PLACE. PI CONNECT, A RESEARCH NETWORK ACCESSED THROUGH IDF EPHR, GREW TO 2,711 USERS IN 2020. PI CONNECT USERS CONSENT INTO THE 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 7,870 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 2020, IDF LAUNCHED A COVID-19 SURVEY, REACHING OUT TO PARTICIPANTS MONTHLY TO GATHER DATA. 890365 OTHER SERVICES TO PATIENTS AND FAMILIES 890365 5014209 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 37 0 true 41 true false false false false false false false false false false false false false false X 16 16 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 JOHN G BOYLE PRESIDENT & 40.00 X X 209708 0 11474 JOHN SEYMOUR BOARD CHAIR 1.00 X X 0 0 0 TRACY A SHAW VICE CHAIR 1.00 X X 0 0 0 STEVE FIETEK FINANCE CHAI 1.00 X X 0 0 0 BRIAN N RATH SECRETARY 1.00 X X 0 0 0 RICHARD LOW JR DEVELOPMENT 1.00 X X 0 0 0 CHUCK LAGE SEROC CHAIR 1.00 X X 0 0 0 REBECCA BUCKLEY PAC CO-CHAIR 1.00 X 0 0 0 KATE SULLIVAN PAC CO-CHAIR 1.00 X 0 0 0 BARBARA BALLARD TRUSTEE 1.00 X 0 0 0 CAROL ANN DEMARET TRUSTEE 1.00 X 0 0 0 TERRY HALPER TRUSTEE 1.00 X 0 0 0 JOHN SMITH TRUSTEE 1.00 X 0 0 0 AMY WALSH TRUSTEE 1.00 X 0 0 0 YVETTE SHORTERN TRUSTEE 1.00 X 0 0 0 JOEL BUCKBERG TRUSTEE 1.00 X 0 0 0 SARAH ROSE CFO 40.00 X 126441 0 16877 KATHERINE ANTILLA VP EDUCATION 40.00 X 122942 0 25530 CHRISTOPHER SCALCHUNES VP RESEARCH 40.00 X 127586 0 5103 HECTOR GARCIA EXECUTIVE VP 40.00 X 137937 0 1950 TAMMY BLACK VP OF COMMUN 40.00 X 122883 0 2515 MARCY CHANG VP OF INST. 40.00 X 110230 0 0 957727 63449 9 false true false BACK OFFICE THINKING LLC 790 E MARKET STREET WEST CHESTER PA 19382 222352 STRATEGIC FACTORY 11195 DOLFIED BLVD OWINGS MILLS MD 21117 175987 FAEGRE DRINKER BIDDLE REATH LLP 75 REMITTANCE DRIVE DEPT 6952 CHICAGO IL 606756952 144061 SIMPLE IT 568 OLD BACHMANS VALLEY ROAD WESTMINSTER MD 21157 130871 NEVINS ASSOCIATES 2150 WASHINGTON AVENUE SUITE 110 TOWSON MD 21204 112550 5 556200 1255835 4673993 6486028 REGISTRATION FEES 541900 6610 6610 6610 194897 194897 95243 95243 95243 95243 323837 556200 323837 6782778 6610 290140 X 206197 206197 336149 336149 2541709 1791454 302163 448092 455609 311863 68680 75066 221934 166705 21938 33291 1686114 1411283 190195 84636 17997 12018 5979 123493 86776 1115 35602 276189 199271 42377 34541 29097 26174 1857 1066 132813 128802 882 3129 6980 6980 57894 40138 10799 6957 35922 25781 5483 4658 SUPPLIES 129798 90928 8565 30305 TELEPHONE 73055 62503 5702 4850 BANK FEES 72718 37223 9992 25503 DUE & SUBSCRIPTIONS 41319 29287 9546 2486 87554 51657 19918 15979 6532541 5014209 706192 812140 760444 905660 1834513 2356604 675724 198385 219057 224068 502609 391236 156371 111373 7847097 8580875 25791 12896 11518997 12389861 915547 336979 38633 568251 915547 943863 X 10062179 10795683 541271 650315 10603450 11445998 11518997 12389861 250237 643282 -50971 X X false true true true true X 7889910 7285264 5305252 8943841 6486028 35910295 7889910 7285264 5305252 8943841 6486028 35910295 17547458 18362837 95177 285001 499810 329215 194897 1404100 19008 31510 1320 37061 88899 37403294 330447 0.49090 0.51120 X PART II, LINE 10 88,899 RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 74996 107047 182043 6350498 6532541 476627 119157 567496 470489 580081 476627 2094693 3142040 351288 277109 227766 182043 1038206 141874 117622 145020 119157 523673 785510 123833 80411 67906 74996 347146 4962050 521778 5483828 4140560 821490 4962050 4412670 -272110 4140560 4211532 201138 4412670 4103383 108149 4211532 1.00000 false false 502609 391236 111373 111373 EQUITY MUTUAL FUNDS 4857580 F FIXED INCOME MUTUAL FUNDS 3716831 F HEDGE FUNDS 6464 F 8580875 PAYCHECK PROTECTION PROGRAM 531049 CAPITAL LEASES 37202 568251 7375089 643282 643282 6731807 50971 50971 6782778 6532541 6532541 6532541 WALKS 806239 487214 319025 319025 DIY/FACEBOOK 73798 68986 4812 4812 880037 556200 323837 323837 323837 true SCHOLARSHIPS & GRANTS 162 206197 X X X false false false false false false false false false JOHN G BOYLE PRESIDENT & CEO 209708 11474 221182 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 MORE THAN 9,765 REQUESTS FROM INDIVIDUALS AND FAMILIES SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. IDF FILLED 399 REQUESTS TO LOCATE A SPECIALIST; THE MOST COMMON INQUIRY FROM CONSTITUENTS. 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, 199 INDIVIDUALS MET WITH 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 7 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. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED 7 RESEARCH GRANTS IN 2020. IDF EPHR, AN ONLINE PERSONAL HEALTH RECORD FOR 4,733 INDIVIDUALS WITH PI IS AN ONLINE TOOL THAT HELPS PATIENTS TAKE CHARGE OF THEIR HEALTH AND MANAGE THEIR INFORMATION IN ONE PLACE. PI CONNECT, A RESEARCH NETWORK ACCESSED THROUGH IDF EPHR, GREW TO 2,711 USERS IN 2020. PI CONNECT USERS CONSENT INTO THE 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 7,870 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 2020, IDF LAUNCHED A COVID-19 SURVEY, REACHING OUT TO PARTICIPANTS MONTHLY TO GATHER 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 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 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 1,411,283 190,195 84,636 FORM 990, PAGE 12, PART XII, LINE 2C THE FINANCE COMMITTEE ASSUMES REPONSIBILITY FOR OVERSIGHT OF THE AUDIT AND SELECTION OF AN INDEPENDENT ACCOUNTANT. THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.