2026-06-01T15:03:07-05:00 2025-12-31 861400078 EVERGREEN ALLIANCE 4332 CERRITOS AVE LOS ALAMITOS CA 90720 990 2025-01-01 464617970 PROJECT ALIVE PROJ 8652489092 4704 WALTHAM FOREST DRIVE DAVENPORT FL 33837 KAREN BEATTY INTERIM EXECUTIVE DIRECTOR 8652489092 2026-06-01 1 REBECCA CHRISTIANSEN P01219191 7143728110 2026-06-01 2025 2025-03-06 01:10:19Z PROJECT ALIVE FOUNDATION KAREN BEATTY 4704 WALTHAM FOREST DRIVE DAVENPORT FL 33837 916039 0 X WWW.PROJECTALIVE.ORG X 2014 TN PROJECT ALIVE EXISTS TO FIND A CURE FOR HUNTER SYNDROME THROUGH RESEARCH AND ADVOCACY, AND PROVIDE EDUCATION AND RESOURCES TO THE HUNTER SYNDROME COMMUNITY. 14 14 5 10 -1077 0 315263 415302 7784 20000 80359 42535 3698 -9791 407104 468046 350596 59659 0 0 218183 314347 0 0 90486 345229 475168 914008 849174 -506904 -381128 2316110 1882123 250657 183056 2065453 1699067 X PROJECT ALIVE EXISTS TO FIND A CURE FOR HUNTER SYNDROME THROUGH RESEARCH AND ADVOCACY, AND PROVIDE EDUCATION AND RESOURCES TO THE HUNTER SYNDROME COMMUNITY. 0 0 71856 46015 RESEARCH GRANTS - PROVIDES FUNDING TO SUPPORT RESEARCH IN THE HUNTER SYNDROME SPACE THAT FILLS CRITICAL GAPS IN CURRENT KNOWLEDGE ACROSS BASIC SCIENCE, CRITICAL CARE AND TRANSLATIONAL THERAPEUTICS TO IMPROVE THE LIVES OF THOSE AFFECTED WITH HUNTER SYNDROME AND THEIR FAMILIES. 90935 20000 FAMILY CASE MANAGEMENT - RECEIVES COMMUNITY ENROLLMENT FORMS FROM FAMILIES, MAKES CONTACT WITH THE ENROLLED FAMILY TO DISCUSS PROGRAMS OFFERED BY PROJECT ALIVE AND ASSISTS IN FINDING NEEDED RESOURCES, I.E.-CLINICAL TRIAL INFORMATION, LOCAL SUPPORT SERVICES, PHYSICIAN INFORMATION, ETC. THIS INCLUDES HUNTER HEALTH PROGRAM. 454877 13644 "N PERSON - THE YEARLY FAMILY FAIR BRINGS MPS II FAMILIES, THE MEDICALCOMMUNITY, EDUCATORS, AND INDUSTRY TOGETHER TO ATTEND SESSIONS ONSUBJECTS IMPORTANT TO THE COMMUNITY. FAMILIES HAVE THE OPPORTUNITY TO TALK WITH INDUSTRY PARTNERS, OTHER SUPPORT ORGANIZATIONS, AND MEET OTHER FAMILIES WHO ARE AFFECTED BY MPS II. HOSTED A MARKET INSIGHTS ROUNDTABLE TO DISCUSS WITH INSURANCE PAYORS THE NEED FOR THEM TO BE PROACTIVE IN HOW THEY WILL HANDLE COVERAGE OF NEWLY FDA APPROVED TREATMENTS FOR MPS II PATIENTS. 4609 HELPING HANDS PROGRAM - THIS PROGRAM IS TO RECOGNIZE FAMILIES THAT ARE DEALING WITH A MAJOR MEDICAL CRISIS WITH THEIR CHILD OR SUPPORT FOR THE DEATH OF A CHILD. PROJECT ALIVE WILL SEND A $50-$100 GIFT CARD FOR FOOD OR GAS TO PROVIDE SMALL RELIEF FOR THIS TIME. WE ALSO SEND FLOWERS FROM THE BOARD TO FUNERALS TO HONOR THE CHILD. 30773 ALL OTHER - ADVOCACY 35382 653050 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 0 0 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 5 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 14 14 1 0 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 1 1 0 TN CA X KAREN BEATTY 8652489092 4704 WALTHAM FOREST DRIVE DAVENPORT FL 33837 KYLE UNDERWOOD CHAIR 2.00 X X 0 0 0 ELIA HENRIQUEZ VICE CHAIR 2.00 X X 0 0 0 KEVIN FUHRMANN TREASURER 2.00 X X 0 0 0 JENN ESTEVEZ SECRETARY 2.00 X X 0 0 0 JOHN BARBOUR DIRECTOR 1.00 X 0 0 0 CORY BRIDDLE DIRECTOR 2.00 X 0 0 0 AARON BYZAK DIRECTOR 2.00 X 0 0 0 ANNE AND JEFF DENNEEN DIRECTOR 2.00 X 0 0 0 KATEY HOFFMAN DIRECTOR 1.00 X 0 0 0 VICTOR NWABA DIRECTOR 1.00 X 0 0 0 ASHLY WIEBELT DIRECTOR 1.00 X 0 0 0 DAIZA GORDON DIRECTOR 1.00 X 0 0 0 KYRAH JONES DIRECTOR 2.00 X 0 0 0 JEANETTE HENRIQUEZ DIRECTOR 1.00 X 0 0 0 MIRIAM PEDROZA DIRECTOR (UNTIL 3/31/25) 1.00 X 0 0 0 KRISTIN MCKAY PRESIDENT 40.00 X 86240 0 0 86240 0 0 0 0 0 0 0 73410 341892 14799 415302 LISENSING FEES 900099 20000 20000 20000 45512 45512 414000 416977 -2977 -2977 -2977 19800 73410 28514 -8714 -8714 1425 2502 -1077 -1077 468046 20000 -1077 33821 46015 46015 13644 13644 86239 35358 15523 35358 176341 151074 232 25035 9922 7045 595 2282 20301 13654 2333 4314 21544 15296 1293 4955 110 110 10050 10050 2732 2732 78849 72154 6695 1111 741 370 4977 1684 2351 942 15180 15180 4458 3303 1155 66485 55351 5073 6061 13124 3381 9053 690 5495 5495 UBIT 1672 1672 COMMUNITY ENGAGEMENT 213455 213455 SUBSCRIPTIONS & SOFTWAR 23405 5715 10747 6943 PROFESSIONAL DEVELOPMEN 18118 18118 15947 13566 2381 849174 653050 105638 90486 1848623 194919 1147331 27311 32792 36148 89276 404028 417805 2316110 1882123 250657 136848 46208 250657 183056 X 1863142 1491275 202311 207792 2065453 1699067 2316110 1882123 -381128 14742 0 X 1 X 0 0 0 X 1155936 277557 83680 315263 415302 2247738 1155936 277557 83680 315263 415302 2247738 2247738 61020 45512 106532 174284 86622 33494 3698 298098 2652368 212246 0.84740 0.85680 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 X PART X, LINE 2: THE FOUNDATION HAS RECEIVED TAX-EXEMPT STATUS FROM THE INTERNAL REVENUE SERVICE AND TENNESSEE SECRETARY OF STATE UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AND UNDER REVENUE AND TENNESSEE CODE 67-6-322, RESPECTIVELY. SINCE THE FOUNDATION IS EXEMPT FROM FEDERAL AND STATE INCOME TAX LIABILITY, NO PROVISION IS MADE FOR CURRENT OR DEFERRED INCOME TAXES. THE FOUNDATION USES THE SAME ACCOUNTING METHODS FOR TAX AND FINANCIAL REPORTING. MANAGEMENT HAS CONSIDERED ITS TAX POSITIONS AND BELIEVES THAT ALL OF THE POSITIONS TAKEN IN ITS FEDERAL AND STATE EXEMPT ORGANIZATION RETURNS ARE MORE LIKELY THAN NOT TO BE SUSTAINED UPON EXAMINATION. THE FOUNDATION'S RETURNS ARE SUBJECT TO EXAMINATION BY FEDERAL AND STATE TAXING AUTHORITIES, GENERALLY FOR THREE YEARS AND FOUR YEARS, RESPECTIVELY, AFTER THEY ARE FILED. FUNDRAISING GALA 93210 73410 19800 3776 2710 14190 2390 5448 93210 73410 19800 3776 2710 14190 2390 5448 28514 -8714 1 BRIANNA YUND PHD LP-UNIVERSITY OF MN 100 CHURCH STREET SE MINNEAPOLIS MN 55455 416007513 501(C)(3) 14084 0 PROJECT: COGNITIVE AND SOMATIC OUTCOMES OF HEMATOPOIETIC CELL TRANSPLANTATION FOR HUNTER SYNDROME. SOCIETY FOR MUCOPOLYSACHARIDE DISEASES (MPS SOCIETY) MPS HOUSE REPTON PLACE WHITE LION ROAD AMERSHAM UK HP7 9LP 112734849 501(C)(3) 31931 0 PHASE II OF THE MPS AIRWAY PROJECT, PUBLICATION PHASE OF INTERNATIONAL CONSENSUS GUIDELINES ON AIRWAY MANAGEMENT. 2 TRAVEL TO FAMILY FAIR 7 13644 FMV PROVIDED TRAVEL FOR FAMILIES TO ATTEND THE FAMILY FAIR PART I, LINE 2: FOR GRANTS AWARDED BY PROJECT ALIVE, WE WORK WITH THE AWARDEE ON SETTING UP REPORTING SCHEDULES BASED ON THE TYPE OF RESEARCH AND LENGTH OF TIME OF THE PROJECT. WE ALSO REQUIRE FINANCIAL REPORTING TO TRACK HOW FUNDS ARE SPENT TO ENSURE THEY ARE FOLLOWING THE BUDGET THAT WAS SUBMITTED WITH THEIR GRANT APPLICATION. EXAMPLES OF REPORTING CADENCE CAN BE QUARTERLY, BI-YEARLY, OR END OF PROJECT FOR THOSE THAT ARE LESS THAN A YEAR IN LENGTH, REPORTS ARE TO INCLUDE ALL BUDGET AND MILESTONES UPDATES. WE ALSO REQUIRE A FINAL REPORT TO BE RECEIVED WITHIN 30 DAYS OF COMPLETION, INCLUDING THE SCIENTIFIC SUMMARY, FULL FINANCIAL ACCOUNTING, AND THE COMMUNITY IMPACT OF THEIR FINDINGS. FORM 990, PART VI, SECTION A, LINE 2 BOARD SECRETARY JULIE FERULLO AND DIRECTOR DAVID FERULLO ARE MARRIED BUT SHARE A SINGLE BOARD SEAT. FORM 990, PART VI, SECTION B, LINE 11B THE ORGANIZATION PROVIDES AN ELECTRONIC COPY OF THE 990 TO ITS BOARD MEMBERS FOR REVIEW AND COMMENTS PRIOR TO FILING THE RETURN. FORM 990, PART VI, SECTION B, LINE 12C ANNUAL CONFLICT OF INTEREST FORMS ARE CIRCULATED TO EACH BOARD MEMBER FOR SIGNING AND SIGNED FORMS ARE RETAINED IN THE PRESIDENT'S OFFICE FILES. ALL BUSINESS TRANSACTIONS ARE EVALUATED FOR ANY POTENTIAL CONFLICTS OF INTEREST. FORM 990, PART VI, SECTION B, LINE 15 THE PRESIDENT'S COMPENSATION IS ESTABLISHED USING MARKET DATA FROM THE NONPROFIT COMPENSATION REPORT BY CANDID TO ENSURE ALIGNMENT WITH COMPARABLE ORGANIZATIONS. EACH YEAR, THE BOARD CONDUCTS A FORMAL REVIEW THAT INCLUDES PERFORMANCE EVALUATION, GOVERNANCE COMMITTEE REVIEW, AND APPROVAL OF ANY MERIT OR COST-OF-LIVING ADJUSTMENTS BY BOARD VOTE. ALL APPROVED CHANGES ARE DOCUMENTED AND IMPLEMENTED BY THE DIRECTOR OF OPERATIONS. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION CURRENTLY DOES NOT SHARE THESE ITEMS PUBLICLY.