2025-04-18T13:03:48-05:00 2024-12-31 410746749 CLIFTONLARSONALLEN LLP PO BOX 23819 GREEN BAY WI 54305 990 2024-01-01 262849140 NATIONAL PKU ALLIANCE INC NATI 8556758211 1802 VERNON STREET NW PMB2389 WASHINGTON DC 20009 RHONDA CONNOLLY PRESIDENT 8556758211 2025-04-17 1 1 KRISTEN DONLEVY P01670215 9204367800 2025-04-17 2024 2025-03-06 01:10:19Z X RHONDA CONNOLLY 1802 VERNON STREET NW PMB2389 WASHINGTON DC 20009 4272562 0 X WWW.NPKUA.ORG X 2008 DE IMPROVE THE LIVES OF INDIVIDUALS WITH PKU AND PURSUE A CURE FOR PKU. 12 12 7 150 0 0 1513280 2050617 13500 57609 143457 439923 -364414 15240 1305823 2563389 423501 488881 0 0 638231 684090 0 0 173720 812828 958732 1874560 2131703 -568737 431686 4756738 5311012 160240 356757 4596498 4954255 X OUR MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALS WITH PKU, PURSUE A CURE BY EXPANDING RESEARCH AND PROVIDE EDUCATION AND SUPPORT TO INDIVIDUALS LIVING WITH PKU AND THEIR CAREGIVERS. 0 0 447542 0 0 IN 2024, THE NPKUA HOSTED OUR BIENNIAL COMMUNITY CONFERENCE FROM JULY 16TH TO 19TH OUTSIDE OF WASHINGTON, DC. ATTENDEES INCLUDED 110 INDIVIDUALS WITH PKU, THEIR FAMILIES/CAREGIVERS, INDUSTRY PARTNERS, AND LEADING EXPERTS IN THE FIELD OF PKU RESEARCH, CLINICAL CARE, NUTRITION, AND ADVOCACY. IN TOTAL, WE WELCOMED 460 ATTENDEES FROM 12 COUNTRIES. ACROSS THREE DAYS WE HELD MEANINGFUL CONVERSATIONS THROUGH EDUCATIONAL PRESENTATIONS AND ACTIVITIES DISCUSSING RESEARCH, CLINICAL TRIALS, MENTAL HEALTH, DIET MANAGEMENT AND COMMUNITY ENGAGEMENT. 936985 470432 0 THE NPKUA APPROVED 3 RESEARCH GRANTS FROM THE 2024 RESEARCH GRANT CYCLE FOR A TOTAL OF $470,432. THE RESEARCH PROJECTS FOCUS ON PKU ASSESSMENT TOOLS AS WELL AS PKU TREATMENTS AND THERAPIES THAT DRIVE PROGRESS TOWARDS A CURE. AS OF 2024, THE NPKUA HAS AWARDED $5,994,699 SUPPORTING OVER 80 RESEARCH PROJECTS 146787 0 57609 THE NPKUA HELD A MULTIDISCIPLINARY SCIENCE CONFERENCE IN 2024. THIS UNIQUE CONFERENCE INCLUDED 80 ACADEMIC RESEARCHERS, CLINICIANS, INDUSTRY PARTNERS IN A COLLABORATIVE FORUM TO FURTHER THE DEVELOPMENT OF TREATMENTS FOR PKU. THE KEYNOTE SPEAKER, FROM THE FDA, ADDRESSED NOVEL CLINICAL TRIAL DESIGNS USED IN THE APPROVAL PROCESS OF DRUGS FOR RARE DISEASES. SESSIONS AND DISCUSSIONS INCLUDED CLINICAL OUTCOME ASSESSMENT TOOLS, NEUROCOGNITIVE IMPACTS ON EXECUTIVE FUNCTION, RELEVANT CLINICAL OUTCOME USING AI, NEW METHOD TO ASSESS ANXIETY AND DEPRESSION, AND SYMPTOM SEVERITY AND IMPACT SCALE. FOCUS ALSO INCLUDED BRINGING ADULTS BACK TO CARE AND CHALLENGES FACED WITH THE DRUG APPROVAL PROCESS. 169370 18449 0 COMMUNITY ENGAGEMENT CONTINUES TO BE A CORE PILLAR OF THE NATIONAL PKU ALLIANCE. THE COMMUNITY ENGAGEMENT DIRECTOR IS RESPONSIBLE FOR PLANNING AND MANAGING PROGRAMS FOR THE PKU COMMUNITY, INCLUDING A MENTORING PROGRAM, COMMUNITY CALLS, SUPPORT KITS, MATERNAL PKU PATIENT SUPPORT, ADVOCACY EFFORTS AND AN AFFILIATE PROGRAM.THE DIRECTOR SCHEDULES, MANAGES AND ATTENDS VIRTUAL CALLS WITH THE COMMUNITY ACROSS DIFFERENT PKU AGE GROUPS AND PKU CAREGIVER TYPES. 48 CALLS WERE HELD IN 2024.IN 2024, THE NPKUA MENTOR PROGRAM GREW TO SUPPORT OVER 30 CAREGIVERS AND INDIVIDUALS WITH PKU THROUGH PERSONALIZED ONE-ON-ONE MENTORING, WITH MENTORS CONNECTING VIRTUALLY AND IN PERSON TO SHARE EXPERIENCES AND DEVELOP SKILLS TO BETTER ASSIST THEIR MENTEES.THE NPKUA ADVOCACY COMMITTEE WORKS ALONGSIDE MEMBERS OF THE BROADER RARE DISEASE COMMUNITY TO ADVANCE EFFORTS AROUND NUTRITION, EQUITY AND OTHER PRIORITIES OF THE PKU COMMUNITY. THE COMMITTEE DEVELOPED A MEDIA TOOLKIT TO HELP COMMUNITY MEMBERS SHARE THEIR STORIES. NPKUA ALSO SUPPORTED OVER 10 STATE AND FEDERAL LEGISLATIVE ADVOCACY EFFORTS.IN 2024 NPKUA PROVIDED $18,449 TO NPKUA AFFILIATES TO SUPPORT COMMUNITY EVENTS AND CAMPS IN THEIR REGIONS. DURING THE YEAR, NPKUA ALSO MET ONE-ON-ONE WITH INDIVIDUAL AFFILIATE LEADERS TO BETTER UNDERSTAND THEIR GOALS AND NEEDS. IN 2024, 85 NEWBORN KITS AND/OR PKU GUIDES WERE DELIVERED TO FAMILIES WELCOMING A NEW BABY WITH PKU. IN 2024, 55 PACKAGES OF DIET-APPROPRIATE FOOD WERE DELIVERED TO MATERNAL PKU PATIENTS TO BEST SUPPORT THEIR LOW-PROTEIN DIET. 169370 18449 0 1700684 1 1 0 0 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 40 0 7 1 0 0 0 0 0 0 0 0 0 0 0 0 X 12 12 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 1 1 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 X E2E BUSINESS MANAGEMENT FIRM 8162894274 519 SOUTHWEST BLVD KANSAS CITY MO 64108 RHONDA CONNOLLY PRESIDENT 10.00 X X 0 0 0 ELIZABETH ASELAGE VICE PRESIDENT 2.00 X X 0 0 0 ALISON REYNOLDS SECRETARY 2.00 X X 0 0 0 DAN LAZZARI TREASURER 2.00 X X 0 0 0 CHRISTINA LOVE DIRECTOR 2.00 X 0 0 0 CHARLES BUCKLER DIRECTOR 2.00 X 0 0 0 MARK GRALEN DIRECTOR 2.00 X 0 0 0 MICHAEL FINKEL DIRECTOR 2.00 X 0 0 0 SUSAN BERRY DIRECTOR 2.00 X 0 0 0 LILLIAN ISABELLA DIRECTOR 2.00 X 0 0 0 HEIDI MAXFIELD DIRECTOR 2.00 X 0 0 0 ADAM SHERMAN DIRECTOR 2.00 X 0 0 0 LISA MILBERG THRU MAY 24 EXECUTIVE DIRECTOR 40.00 X 97163 0 0 CATHERINE WARREN EXECUTIVE DIRECTOR 40.00 X 118346 0 1577 SUSAN GRAY DIRECTOR OF DEVELOPMENT 40.00 X 140372 0 2739 355881 0 4316 2 0 0 0 JANE & ALAN LLC 265 E 66TH ST 21B NEW YORK NY 10065 WEBSITE DEVELOPMENT 126144 BLAIR WITTMER CONSULTING 2120 WYOMING AVE NW UNIT T WASHINGTON DC 20008 CONSULTING SERVICES 117647 2 903323 1147294 290003 2050617 CONFERENCE FEES 561499 57609 57609 57609 148048 148048 1628518 1336643 291875 291875 291875 360984 903323 372530 -11546 -11546 OTHER INCOME 900099 26786 26786 26786 2563389 57609 0 455163 X 388881 388881 100000 100000 217086 144826 38559 33701 377713 265742 49671 62300 42419 26781 9475 6163 46872 29541 10430 6901 5439 5439 78411 78411 18996 18996 226083 171237 16671 38175 35090 21254 8299 5537 1939 608 1264 67 6015 3609 1203 1203 26493 25253 620 620 515548 515548 12341 7404 1234 3703 8538 8538 CREDIT CARD FEES 15350 15350 ORGANIZATIONAL (CORP) E 6985 6985 DUES 759 759 BANK FEES 383 383 362 362 2131703 1700684 257299 173720 397925 709687 407774 5000 2750 12216 155524 429113 65883 119648 148100 12341 0 135759 3626882 3799589 100000 100000 4756738 5311012 78014 51780 199977 82226 105000 160240 356757 X 4555310 4923821 41188 30434 4596498 4954255 4756738 5311012 431686 -73929 0 X 0 1 X 1 0 X 1699486 1676954 2253786 1513280 2050617 9194123 1699486 1676954 2253786 1513280 2050617 9194123 515347 8678776 67830 81203 81652 103854 148048 482587 13601 13601 5000 26786 31786 9722097 118728 0.89270 0.87310 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: MISCELLANEOUS INCOME - 2023 AMOUNT: $ 5,000. 2024 AMOUNT: $ 26,786. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 148100 12341 135759 135759 2735153 -73929 264689 190760 2544393 18996 18996 2563389 2377396 264689 264689 2112707 18996 18996 2131703 PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES NETTED WITH REVENUE 264,689. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSES NETTED WITH REVENUE 264,689. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS 100000 0 0 0 0 0 0 100000 0 100000 EUROPE (INCLUDING ICELAND & GREENLAND) CREATION OF QUESTIONNAIRE TO UNDERSTAND THE FULL IMPACT OF LIVING WITH PKU TO BE UTILIZED WORLDWIDE. 100000 DIRECT 0 1 0 0 0 0 0 0 PART I, LINE 2: GRANT RECIPIENT WILL BE REQUIRED TO REPORT ON GRANT PROGRESS AT THE HALFWAY POINT AND COMPLETE A FINAL REPORT UPON GRANT COMPLETION. LTL CHICAGO 613719 442191 171528 90071 54716 4626 33201 LTL NASHVILLE 650588 461132 189456 69523 53125 650 66618 1264307 903323 360984 159594 107841 5276 99819 372530 -11546 1 OREGON HEALTH AND SCIENCE UNIVERSITY 3181 SW SAM JACKSON PARK ROAD PORTLAND OR 97239 231352685 501(C)(3) 249362 0 PKU RESEARCH MARYLAND ALLIANCE OF PKU FAMILIES INC 1173 RIDGE DRIVE PASADENA MD 21122 521879326 501(C)(3) 8440 0 PKU RESEARCH 2 PART I, LINE 2: EACH RESEARCH GRANTEE MUST PROVIDE A MID-TERM NARRATIVE REPORT AND A YEAR-END FINANCIAL REPORT TO NPKUA. 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 12365 SALE OF COMPRABLE ITEMS X 7 13149 SALE OF COMPRABLE ITEMS X 34 17735 SALE OF COMPRABLE ITEMS X TRIPS/EXPERIENCE PACKAGES 86 245341 FMV X BASKET 6 1413 FMV 0 0 0 1 PART I, COLUMN (B): NUMBER OF CONTRIBUTORS PART I, LINE 32B: THE NPKUA HIRES 2 VENDORS TO ASSIST WITH FUNDRAISING GALA EVENTS (2 ANNUALLY). THE AUCTIONEER IS KEITH MCLANE OF KLM AUCTIONS AND THE AUCTION PROCESSING FIRM IS C2 AUCTIONS. 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 THE 990 WILL BE REVIEWED BY THE EXECUTIVE DIRECTOR AND FINANCE COMMITTEE, WHICH INCLUDES THE TREASURER. ONCE THEIR FEEDBACK IS CONSIDERED AND ALL QUESTIONS ARE CLOSED, THE 990 WILL BE SUMITTED FOR FINAL REVIEW. 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 2024. 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. NPKUA AUDITED FINANCIALS AND 990 ARE POSTED TO THE WEBSITE. FORM 990, PART IX, LINE 11G CONTRACTED FEES: PROGRAM SERVICE EXPENSES 171,237. MANAGEMENT AND GENERAL EXPENSES 16,671. FUNDRAISING EXPENSES 38,175. TOTAL EXPENSES 226,083.