2023-04-27T16:25:06-05:00 2022-12-31 410746749 CLIFTONLARSONALLEN LLP PO BOX 23819 GREEN BAY WI 543053819 990 2022-01-01 262849140 NATIONAL PKU ALLIANCE INC NATI 5164435820 945 LEXINGTON AVENUE 269 NEW YORK NY 10021 LISA MILBERG EXECUTIVE DIRECTOR 5614435820 2023-04-13 1 LISA MILBERG 999009999 0 BECKY MEYER P01246910 9204367800 2023-04-05 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z X JERRY ELKINS 945 LEXINGTON AVENUE 269 NEW YORK NY 10021 4158234 0 X WWW.NPKUA.ORG X 2008 DE TO IMPROVE THE LIVES OF INDIVIDUALS WITH PKU AND PURSUE A CURE. 14 14 8 150 0 0 1682965 2253786 2630 44989 202026 32422 9493 -117234 1897114 2213963 402709 471920 0 0 399725 513318 0 0 201229 611122 821567 1413556 1806805 483558 407158 5250643 4987467 293589 66532 4957054 4920935 X THE NATIONAL PKU ALLIANCE (NPKUA) WORKS TOWARD EXPANDING PKU RESEARCH AND ACCELERATING THE TIMELINE FOR A CURE BY INVESTING IN PEER-REVIEWED AND TARGET RESEARCH. NPKUA PROVIDES EDUCATION AND SUPPORT TO PEOPLE LIVING WITH PKU. NPKUA IS THE NATIONAL VOICE FOR ADVOCACY AT THE FEDERAL LEVEL. THE BOARD OF DIRECTORS INCLUDES LEADERS OF LOCAL ORGANIZATIONS THROUGHOUT THE NATION, AS WELL AS REPRESENTATIVES OF THE ACADEMIC MEDICAL COMMUNITY AND INDUSTRY. 0 0 539276 435718 0 AWARDED $435,718 IN OUR RESEARCH PROGRAM TO RESEARCH PROJECTS AIMED AT IMPROVING PKU TREATMENT AND FINDING A CURE. 499105 36202 0 EDUCATION AND ADVOCACY - CREATED AND RELEASED EDUCATIONAL VIDEOS WITH PATIENTS AND MEDICAL PROFESSIONALS ON PKU TREATMENT OPTIONS, TRANSITIONING TO ADULT CARE AND MATERNAL PKU. DEVELOPED TWO NEW MENTORING PROGRAMS TO PROVIDE SUPPORT TO ADULTS STRUGGLING TO MANAGE THEIR PKU. 341442 0 45101 PROVIDED EDUCATION AND SUPPORT TO 400 PATIENTS THROUGH A VIRTUAL CONFERENCE 1379823 1 1 0 1 0 0 0 0 0 0 1 0 0 0 0 0 1 0 0 0 1 1 0 0 1 0 0 1 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 31 0 8 1 0 0 0 0 0 0 0 0 0 0 X 14 14 0 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AK AR CA CO CT DE FL GA IL IA KS KY LA ME MD MA MI MN MS NV NH NJ NM NY ND OH OK OR PA RI SC TN VA WA WV WI DC UT X LISA MILBERG 5164435820 945 LEXINGTON AVENUE 269 NEW YORK NY 10021 JERRY ELKINS PRESIDENT 2.00 X X 0 0 0 RICHARD MICHAUX VICE PRESIDENT 2.00 X X 0 0 0 JEB HABER VICE PRESIDENT 2.00 X X 0 0 0 J GLENN HABER TREASURER 2.00 X X 0 0 0 RHONDA CONNOLLY SECRETARY 1.00 X X 0 0 0 ELIZABETH ASELAGE DIRECTOR 1.00 X 0 0 0 SUSAN BERRY DIRECTOR 1.00 X 0 0 0 HEATHER BOMAR DIRECTOR 1.00 X 0 0 0 BRITTANY HOLMES DIRECTOR 1.00 X 0 0 0 LILLIAN ISABELLA DIRECTOR 1.00 X 0 0 0 HEIDI MAXFIELD DIRECTOR 1.00 X 0 0 0 DAVID MICKLE DIRECTOR 1.00 X 0 0 0 BRANDON MORGAN DIRECTOR 1.00 X 0 0 0 ALISON REYNOLDS DIRECTOR 1.00 X 0 0 0 LISA MILBERG EXECUTIVE DIRECTOR (SINCE MAY) 40.00 X 138846 0 2725 CHRISTINE SCHLEGEL EXECUTIVE DIRECTOR (PART-YEAR) 40.00 X 38215 0 0 177061 0 2725 1 0 0 0 0 407280 1846506 89472 2253786 CONFERENCE FEES 561499 44989 44989 44989 81652 81652 1672304 1721534 -49230 -49230 -49230 105391 407280 222737 -117346 -117346 112 0 112 112 2213963 45101 0 -84924 X 456460 456460 15460 15460 179780 75847 52921 51012 278720 173269 25604 79847 19447 10389 3158 5900 35371 18024 6487 10860 15830 15830 39547 39547 16718 16718 247320 204229 16508 26583 469 281 94 94 83671 53631 14668 15372 12998 1434 11405 159 45049 27395 6762 10892 341442 341442 854 512 171 171 2681 2681 CREDIT CARD FEES 8230 8230 DUES 1313 1313 5445 137 4969 339 1806805 1379823 225753 201229 2384 1208353 1476314 340810 33000 30020 22995 88134 12370 3815 1956 1103 1859 3649708 3271060 100000 5250643 4987467 37952 56532 255637 10000 293589 66532 X 4716843 4827469 240211 93466 4957054 4920935 5250643 4987467 407158 -443277 0 X 0 1 X 1 0 X 1991296 1389469 1699486 1676954 2253786 9010991 1991296 1389469 1699486 1676954 2253786 9010991 495307 8515684 21195 54794 67830 81203 81652 306674 1916 13601 15517 1474 1474 9334656 130655 0.91230 0.90500 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2019 AMOUNT: $ 1,474. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 1 108490 1 0 0 108490 0 PART II-B, LINE 1: NPKUA HAS CONTRACTED WITH AN OUTSIDE FIRM TO ADVISE NPKUA ON LEGISLATIVE ISSUES IMPACTING THE ENTITY, WORK WITH APPROPRIATE CONGRESSIONAL COMMITTEES, LEADERSHIP AND INDIVIDUAL MEMBERS TO FACILITATE NPKUA'S AGENDA. CONSULANT WILL WORK WITH AGENCIES WITHIN THE ADMINISTRATION ON BEHALF OF NPKUA. 3815 1956 1859 1859 1910830 -443277 156862 -286415 2197245 16718 16718 2213963 1946949 156862 156862 1790087 16718 16718 1806805 PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES NETTED WITH REVENUE 156,862. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES NETTED WITH REVENUE 156,862. 1 RUSSIA AND NEIGHBORING STATES 0 0 GRANT TO RECIPIENTS IN UKRAINE GRANTS TO ASSIST UKRAINE 15460 0 0 0 0 0 0 15460 0 15460 UKRAINE GRANT ASSISTANCE IN UKRAINE 15460 WIRE TRANSFER 0 1 0 0 0 0 0 0 PART III ACCOUNTING METHOD: GALA 512671 407280 105391 27445 5000 190292 512671 407280 105391 27445 5000 190292 222737 -117346 1 OREGON HEALTH AND SCIENCE UNIVERSITY PO BOX 3003 PORTLAND OR 97239 931176109 501(C)(3) 305765 0 PKU RESEARCH BOSTON CHILDREN'S HOSPITAL PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 129928 0 PKU RESEARCH MARYLAND ALLIANCE OF PKU FAMILIES INC 323 DORCHESTER ROAD PASADENA MD 21222 521879326 501(C)(3) 6775 0 LOCAL SUPPORT TO PKU COMMUNITY 3 PART I, LINE 2: EACH GRANTEE MUST PROVIDE A MID-TERM NARRATIVE REPORT AND A YEAR-END FINANCIAL REPORT TO NPKUA. EACH GRANTEE IS ALSO CONTACTED BY NPKUA'S SCIENTIFIC ADVISORY CHAIR MID-TERM FOR AN INTERIM INTERIEW. ALL GRANTEES ARE REQUIRED TO ENTER INTO A GRANT AGREEMENT BETWEEN THE NPKUA AND THEIR UNIVERSITY OR ORGANIZATION. AFFILIATE ORGANIZATIONS ARE REQUIRED TO PREPARE A REQUEST FOR GRANT FUNDS THAT EXPLAINS THE PROJECT DESCRIPTION IN WHAT THE FUNDS WILL BE USED FOR. THIS REQUEST IS REVIEWED AND APPROVED BY THE ORGANIZATION. GRANTS FUNDS TO AFFILIATES ARE GIVEN OUT BASED ON THE ORGANIZATION'S BUDGET EACH YEAR. X 1 51042 FMV X 5 13200 FMV X 10 11533 FMV X TRIPS/EXPERIENCE PACKAGES 19 13317 FMV X OTHER 1 380 FMV 0 0 0 FORM 990, PART VI, SECTION A, LINE 4 THE ORGANIZATION MADE UPDATES TO THE BYLAWS SINCE THE PRIOR FORM 990 WAS FILED. THE BOARD OF DIRECTORS SHALL HAVE NO MORE THAN FIFTEEN DIRECTORS. THE EXECUTIVE COMMITTEE SHALL NOW INCLUDE ANY ELECTED OFFICERS OF THE BOARD. FORM 990, PART VI, SECTION B, LINE 11B THE BOARD OF DIRECTORS REVIEWS AND APPROVES THE FORM 990 BEFORE IT IS FILED. FORM 990, PART VI, SECTION B, LINE 12C ANY CONFLICTS OF INTEREST FOR OFFICERS, DIRECTORS, AND KEY EMPLOYEES ARE REVIEWED ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15 COMPENSATION WAS DECIDED BY THE BOARD OF DIRECTORS AFTER REVIEWING COMPENSATION LEVELS OF OTHER SIMILAR ORGANIZATIONS. COMPENSATION FOR KEY EMPLOYEES IS DECIDED BY THE BOARD OF DIRECTORS AFTER REVIEWING COMPARABLES OF SIMILAR ORGANIZATIONS. FORM 990, PART VI, SECTION C, LINE 19 THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE TO THE PUBLIC UPON REQUEST, AND IS ALSO COMMUNICATED VIA MEMBER ORGANIZATIONS. FORM 990, PART IX, LINE 11G CONTRACTED FEES: PROGRAM SERVICE EXPENSES 204,229. MANAGEMENT AND GENERAL EXPENSES 16,508. FUNDRAISING EXPENSES 26,583. TOTAL EXPENSES 247,320.