2024-04-19T18:58:42-05:00 2023-12-31 410746749 CLIFTONLARSONALLEN LLP PO BOX 23819 GREEN BAY WI 54305 990 2023-01-01 262849140 NATIONAL PKU ALLIANCE INC NATI 5164435820 945 LEXINGTON AVENUE 269 NEW YORK NY 10021 RHONDA CONNOLLY PRESIDENT 5164435820 2024-04-16 1 RHONDA CONNOLLY 999009999 1 BECKY MEYER P01246910 9204367800 2024-04-15 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z RHONDA CONNOLLY 945 LEXINGTON AVENUE 269 NEW YORK NY 10021 2434421 0 X WWW.NPKUA.ORG X 2008 DE TO IMPROVE THE LIVES OF INDIVIDUALS WITH PKU AND PURSUE A CURE. 8 8 9 150 0 0 2253786 1513280 44989 13500 32422 143457 -117234 -364414 2213963 1305823 471920 423501 0 0 513318 638231 0 0 369773 821567 812828 1806805 1874560 407158 -568737 4987467 4756738 66532 160240 4920935 4596498 X TO IMPROVE THE LIVES OF INDIVIDUALS WITH PKU AND PURSUE A CURE. 0 0 150112 0 0 THE NPKUA PATIENT REGISTRY IS A SECURE DATABASE THAT IS DESIGNED TO COLLECT HEALTH INFORMATION TO HELP RESEARCHERS, CLINICIANS AND THE NPKUA BETTER UNDERSTAND THE PATIENT EXPERIENCE WITH PKU. THE REGISTRY PROVIDES AN ASSESSMENT OF PEOPLE WITH PKU INCLUDING GENOTYPES, PHENYLALANINE LEVELS AND OTHER HEALTH DATA.DURING 2023, THE REGISTRY SUPPORTED RECRUITMENT FOR 9 ACADEMIC AND INDUSTRY STUDIES. THE NPKUA COLLABORATED WITH OVER 10 INDUSTRY AND ACADEMIC PARTNERS TO SUPPORT PRODUCT DEVELOPMENT AND RESEARCH OF NOVEL PKU TREATMENTS AND THERAPIES.THE NPKUA PRESENTED REGISTRY DATA AND/OR BEST PRACTICES FOR MANAGING PATIENT REGISTRIES AT 5 LARGE CONFERENCES AND MEETINGS. 120737 0 13500 THE NPKUA HELD ITS FIRST MULTIDISCIPLINARY SCIENCE CONFERENCE, "BREAK FREE FROM PHE", IN 2023. THIS UNIQUE CONFERENCE INCLUDED 80 RESEARCHERS, CLINICIANS AND INDUSTRY PARTICIPANTS IN A COLLABORATIVE FORUM TO FURTHER THE DEVELOPMENT OF TREATMENTS FOR PKU. THE OBJECTIVES WERE TO INFORM CLINICAL ENDPOINTS FOR DRUG DEVELOPMENT CLINICAL TRIALS. 72084 8197 0 IN 2023, THE NPKUA HIRED A DIRECTOR OF COMMUNITY ENGAGEMENT. THE DIRECTOR IS RESPONSIBLE FOR PLANNING AND MANAGING PROGRAMS FOR THE PKU COMMUNITY, INCLUDING A MENTORING PROGRAM, COMMUNITY CALLS, ADVOCACY EFFORTS AND A VOLUNTEER PROGRAM.THE DIRECTOR SCHEDULES, MANAGES AND ATTENDS VIRTUAL CALLS WITH THE COMMUNITY ACROSS DIFFERENT PKU AGE GROUPS AND PKU CAREGIVER TYPES. 42 CALLS WERE HELD IN 2023.THE NPKUA VOLUNTEER GROUP CONTINUES TO BE A SOURCE OF SUPPORT AS WE CALL ON MEMBERS TO PROVIDE FEEDBACK, SUPPORT SIGNIFICANT PROJECTS AND PLAN FOR FUTURE ENDEAVORS AND EVENTS.LASTLY, THE ADVOCACY COMMITTEE WORKS ALONGSIDE MEMBERS OF THE BROADER RARE DISEASE COMMUNITY TO ADVANCE EFFORTS AROUND NUTRITION, EQUITY AND OTHER PRIORITIES OF THE PKU COMMUNITY. 684242 415304 0 AWARDED $550,000 ACROSS 5 GRANTS THAT SUPPORTED 3 RESEARCHERS IN 2023 AND 5 IN 2024. THE RESEARCH PROJECTS FOCUS ON IMPROVING PSYCHOLOGICAL ASSESSMENTS FOR PKU PATIENTS, AS WELL AS PKU TREATMENTS AND THERAPIES AND PATH TO A CURE. $415,304 WAS FUNDED IN 2023, WITH THE BALANCE PAID IN 2024. 684242 415304 0 1027175 1 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 26 0 1 9 1 0 0 0 0 0 0 0 0 0 0 0 0 X 8 8 0 0 0 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 LISA MILBERG EXECUTIVE DIRECTOR 40.00 X 225000 0 5850 SUSIE GRAY DIRECTOR OF DEVELOPMENT 40.00 X 135776 0 5678 RHONDA CONNOLLY PRESIDENT 10.00 X X 0 0 0 ELIZABETH ASELAGE VICE PRESIDENT 5.00 X X 0 0 0 ALISON REYNOLDS SECRETARY 5.00 X X 0 0 0 ADAM SHERMAN DIRECTOR 1.00 X 0 0 0 DAVID MICKLE DIRECTOR 1.00 X 0 0 0 HEIDI MAXFIELD DIRECTOR 1.00 X 0 0 0 LILLIAN ISABELLA DIRECTOR 1.00 X 0 0 0 SUSAN BERRY DIRECTOR 1.00 X 0 0 0 JERRY ELKINS PRESIDENT (THROUGH JUNE) 2.00 X X 0 0 0 BRANDON MORGAN VP/TREASURER (THROUGH NOV) 2.00 X X 0 0 0 HOMAYOON RAFATIJO DIRECTOR (THROUGH JUNE) 1.00 X 0 0 0 JEB HABER DIRECTOR (THROUGH JUNE) 1.00 X 0 0 0 LEO HOREY III DIRECTOR (THROUGH NOV) 1.00 X 0 0 0 BRITTANY HOLMES DIRECTOR (THROUGH JUNE) 1.00 X 0 0 0 360776 0 11528 2 0 1 0 BLAIR GIANNINI 2120 WYOMING AVE NW APT T WASHINGTON DC 20008 EVENT PLANNING AND MANAGEMENT 124190 1 876269 637011 154674 1513280 CONFERENCE FEES 561499 13500 13500 13500 103854 103854 593391 551929 1859 41462 -1859 39603 39603 205396 876269 574810 -369414 -369414 OTHER INCOME 900099 5000 5000 5000 1305823 13500 0 -220957 X 423501 423501 230850 76965 76942 76943 355700 145586 100436 109678 11084 1969 4392 4723 40597 9396 15204 15997 20596 20596 76166 76166 17003 17003 405483 151201 109335 144947 61285 38539 11373 11373 22320 756 21480 84 47216 36107 5081 6028 143524 140305 3219 3262 3262 BANK FEES 5701 5701 ORGANIZATIONAL (CORP) E 4371 4371 BOOKS, SUBSCRIPTIONS 2850 2850 DUES 429 429 2622 2622 1874560 1027175 477612 369773 1208353 397925 340810 407774 30020 2750 22995 0 155524 12370 65883 0 0 1859 0 3271060 3626882 100000 100000 4987467 4756738 56532 78014 10000 82226 66532 160240 X 4827469 4555310 93466 41188 4920935 4596498 4987467 4756738 -568737 244300 0 X 0 1 X 1 0 X 1389469 1699486 1676954 2253786 1513280 8532975 1389469 1699486 1676954 2253786 1513280 8532975 723559 7809416 54794 67830 81203 81652 103854 389333 1916 13601 15517 1474 5000 6474 8944299 61119 0.87310 0.91230 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2019 AMOUNT: $ 1,474. 2023 AMOUNT: $ 5,000. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 0 0 1 13078 1 0 0 13078 0 PART II-B, LINE 1: NPKUA HAS CONTRACTED WITH AN OUTSIDE FIRM TO ADVISE NPKUA ON LEGISLATIVE ISSUES IMPACTING THE PKU COMMUNITY, WORK WITH APPROPRIATE CONGRESSIONAL COMMITTEES, LEADERSHIP AND INDIVIDUAL MEMBERS TO FACILITATE PRIORITIES OF THE PKU COMMUNITY. CONSULANT WILL WORK WITH AGENCIES WITHIN THE ADMINISTRATION TO ASSIST PRIORITIES OF THE NPKUA. 0 1756806 244300 223686 467986 1288820 17003 17003 1305823 2081243 223686 223686 1857557 17003 17003 1874560 PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES NETTED WITH REVENUE 221,827. LOSS ON DISPOSAL OF EQUIPMENT 1,859. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES NETTED WITH REVENUE 221,827. LOSS ON DISPOSAL OF EQUIPMENT 1,859. GALA 1081665 876279 205386 2850 154674 66024 195459 22484 133320 1081665 876279 205386 2850 154674 66024 195459 22484 133320 574811 -369425 1 OREGON HEALTH AND SCIENCE UNIVERSITY 3181 SW SAM JACKSON PARK ROAD PORTLAND OR 97239 231352685 501(C)(3) 189652 0 PKU RESEARCH UNIVERSITY OF MISSOURI 601 TURNER AVENUE GARAGE RM 201 COLUMBIA MO 65211 266440629 501(C)(3) 155652 0 PKU RESEARCH UNIVERSITY OF PENNSYLVANIA 3620 HAMILTON WALK ROOM 242 PHILADELPHIA PA 19104 231352685 501(C)(3) 50000 0 PKU RESEARCH UNIVERSITY OF SOUTHERN CALIFORNIA 3720 SOUTH FLOWER ST LOS ANGELES CA 90089 951642394 501(C)(3) 20000 0 PKU RESEARCH 4 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 X 0 0 0 0 0 0 0 0 0 LISA MILBERG EXECUTIVE DIRECTOR 215000 0 10000 0 0 0 0 0 5850 0 230850 0 0 0 X 3875 FMV X 12 4855 FMV X TRIPS/EXPERIENCE PACKAGES 51 124651 FMV X FOOD/DRINK 40 19156 FMV X BASKET 8 2137 FMV 0 0 0 0 PART I, COLUMN (B): THE NUMBER OF CONTRIBUTIONS IS BEING REPORTED. FORM 990, PART VI, SECTION A, LINE 1A THE EXECUTIVE COMMITTEE CONSISTS OF THE PRESIDENT, VICE PRESIDENT, SECRETARY, TREASURER, AND ANY OTHER ELECTED OFFICERS OF THE BOARD. THE EXECUTIVE COMMITTEE CAN NOT EXERCISE ANY POWERS OF THE BOARD THAT REQUIRE A SUPERMAJORITY VOTE AS DESCRIBED IN THE BYLAWS. FORM 990, PART VI, SECTION B, LINE 11B BOARD MEMBERS REVIEW THE 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. IF A CONFLICT EXISTS, THE BOARD INDIVIDUAL MUST DISCLOSE ALL MATERIAL FACTS TO THE BOARD OR THE EXECUTIVE COMMITTEE, WHICH SHALL BE REFLECTED IN THE MINUTES OF THE MEETING. THE PERSON WITH A CONFLICT MAY RECUSE THEMSELF AT ANY TIME FROM INVOLVEMENT IN THE DISCUSSION OR DECISION IN WHICH A POTENTIAL CONFLICT OF INTEREST EXISTS. 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. THE PROCESS DESCRIBED HERE WAS LAST COMPLETED IN 2023. 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. FORM 990, PART IX, LINE 11G CONTRACTED FEES: PROGRAM SERVICE EXPENSES 151,201. MANAGEMENT AND GENERAL EXPENSES 109,335. FUNDRAISING EXPENSES 144,947. TOTAL EXPENSES 405,483.