2026-07-21T10:44:05-04:00 2025-12-31 561743537 LANGDON & COMPANY LLP 223 US HIGHWAY 70 EAST SUITE 100 GARNER NC 275294051 990 2025-01-01 112734849 NATIONAL MPS SOCIETY INC NATI 9198060101 PO BOX 14686 DURHAM NC 27709 CARL KAPES TREASURER 9198060101 2026-07-16 true SUSAN DEAN P01281194 9196621001 2026-07-21 2025 2025-03-06 01:10:19Z TERRI KLEIN 1007 SLATER ROAD 220 DURHAM NC 27703 6595629 false X WWW.MPSSOCIETY.ORG X 1985 NY THE NATIONAL MPS SOCIETY EXISTS TO CURE, SUPPORT, AND ADVOCATE FOR MUCOPOLYSACCHARIDOSIS (MPS) AND MUCOLIPIDOSIS (ML). 12 12 14 75 0 1525957 4819156 414716 447650 162666 402848 5099 -115407 2108438 5554247 638917 489588 0 914468 1144767 0 234056 953484 1113615 2506869 2747970 -398431 2806277 3874160 6619926 260484 226815 3613676 6393111 X THE NATIONAL MPS SOCIETY EXISTS TO CURE, SUPPORT, AND ADVOCATE FOR MUCOPOLYSACCHARIDOSIS (MPS) AND MUCOLIPIDOSIS (ML). false false 612165 335225 THE SOCIETY FUNDED APPROXIMATELY 7 RESEARCH GRANTS DURING 2025 FOR THE PURPOSE OF FINDING TREATMENTS AND CURES FOR MPS AND RELATED DISEASES. THE CHIEF SCIENTIFIC OFFICER (CSO) LEADS THE SOCIETYS STRATEGIC DIRECTION IN RESEARCH, NEWBORN SCREENING, AND EMERGING SCIENCE INITIATIVES. THIS ROLE OVERSEES THE DEVELOPMENT AND FUNDING OF RESEARCH PROGRAMS TO ADDRESS UNMET MEDICAL NEEDS IN MPS AND ML DISORDERS, GUIDES ADVOCACY FOR NEWBORN SCREENING EXPANSION, AND EVALUATES INNOVATIVE SCIENTIFIC ADVANCEMENTS. THE CSO COLLABORATES WITH ACADEMIC, CLINICAL, AND INDUSTRY PARTNERS TO DRIVE PROGRESS IN TREATMENT AND DIAGNOSIS, AND ENSURES ALIGNMENT WITH THE ORGANIZATIONS MISSION TO SUPPORT FAMILIES AND ACCELERATE CURES. 482034 154363 THE NATIONAL MPS SOCIETY PROVIDES COMPREHENSIVE SUPPORT TO FAMILIES AFFECTED BY MPS AND ML THROUGH ITS FAMILY SUPPORT AND PATHWAYS PROGRAMS. AT THE TIME OF DIAGNOSIS AND BEYOND, LICENSED SOCIAL WORKERS ENGAGE FAMILIES THROUGH IN-HOME VISITS AND ONGOING GUIDANCE, HELPING THEM NAVIGATE THE COMPLEX CHALLENGES OF LIVING WITH A RARE DISEASE. THE SOCIETY ALSO OFFERS CRITICAL FINANCIAL ASSISTANCE, INCLUDING FUNDING FOR MEDICAL EQUIPMENT, EDUCATIONAL AND BEREAVEMENT SCHOLARSHIPS, EXTENDED HOSPITAL STAYS, MEDICAL TRAVEL, AND CONFERENCE PARTICIPATION. THESE SERVICES ENSURE FAMILIES RECEIVE COMPASSIONATE, PRACTICAL SUPPORT. IN THE CROSSING PATHS PROGRAM EXPANDS EQUITABLE ACCESS TO EDUCATION, CLINICAL STUDIES, AND CRITICAL RESOURCES FOR FAMILIES AFFECTED BY MPS AND ML IN UNDERSERVED INNER-CITY AND RURAL COMMUNITIES. THROUGH OUTREACH, PARTNERSHIPS, AND TAILORED SUPPORT, THE PROGRAM BRIDGES GEOGRAPHIC AND SOCIOECONOMIC BARRIERS, ENSURING FAMILIES HAVE THE KNOWLEDGE AND OPPORTUNITIES TO PARTICIPATE IN CLINICAL RESEARCH AND RECEIVE SPECIALIZED CARE. 1021094 447650 THE SOCIETY PROVIDED INFORMATION SERVICES AND EDUCATIONAL SUPPORT FOR AFFECTED FAMILIES (NEWSLETTERS, SYNDROME BOOKLETS, FACT SHEETS, WEBSITE, DIRECTORY) AND INCREASED PUBLIC AWARENESS OF THESE RARE GENETIC DISEASES (CONFERENCES & ADVOCACY). 2115293 true true false true false false false false false true true false false false true true true false false false true true false false true false false true true true false false false false true false false false true false false false false false false false false true 25 0 true 14 true false false false false false true true false false false false false false X 12 12 true false false false true false false true true false false true true true true true true true true false AK AL AR CA CO CT FL GA HI IL KS KY MA MD ME MI MN MS NC ND NH NJ NM NV NY OH OK OR PA RI SC TN UT VA WA WI WV X X ANGELA GUAJARDO 9198060101 PO BOX 14686 DURHAM NC 27709 X TERRI KLEIN PRESIDENT & 55.00 X 156391 0 4692 SCOTT LOILER CSO 40.00 X 133077 0 3992 MATTHEW ELLINWOOD CSO 40.00 X 64025 0 1921 SHARON KING COO 40.00 X 62865 0 1740 CARL KAPES TREASURER 1.00 X X 0 0 0 STEPHANIE COZINE SECRETARY 1.00 X X 0 0 0 STEVE AMY HOLLAND BOARD CHAIRM 1.00 X X 0 0 0 MAUREEN COTE VICE CHAIRMA 1.00 X X 0 0 0 STEVEN CHESSER DIRECTOR 1.00 X 0 0 0 COLLEEN KRAFT DIRECTOR 1.00 X 0 0 0 TAMARA CULLERE DIRECTOR 1.00 X 0 0 0 LISA BERRY DIRECTOR 1.00 X 0 0 0 SHERI LUEB DIRECTOR 1.00 X 0 0 0 SCOTT LYNN HOPKINS DIRECTOR 1.00 X 0 0 0 PATRICIA ESPINAL DIRECTOR 1.00 X 0 0 0 JASON MADISON DIRECTOR 1.00 X 0 0 0 416358 12345 2 false true false 1908 1675 1032787 3782786 72910 4819156 CONFERENCE INCOME 447650 447650 447650 79185 79185 1037099 713436 323663 323663 323663 152886 1032787 327946 -175060 REFUND-PRIOR YEAR GRANTS PAID 59653 59653 59653 5554247 830966 79185 285225 285225 154363 154363 50000 50000 428704 282231 83364 63109 566180 372738 110098 83344 16349 10763 3179 2407 54100 35616 10520 7964 79434 52294 15447 11693 29451 29451 33799 33799 69439 69439 31474 31474 84993 55967 15318 13708 79494 38598 22417 18479 63599 38160 25439 155073 155073 376787 376787 29679 17808 11871 7705 4623 3082 SPONSORED EXPENSES 94942 94942 DUES AND SUBSCRIPTIONS 52552 16038 3162 33352 BEREAVEMENT 4628 4628 2747970 2115293 398621 234056 155901 471176 271284 1050385 56450 100504 7631 9595 64269 68336 66628 38099 30302 28529 3149341 4801662 138982 89739 3874160 6619926 66473 62502 50000 50000 20000 144011 94313 260484 226815 X 1263540 956987 2350136 5436124 3613676 6393111 3874160 6619926 X 2806277 -26842 X false true X true false X 1407387 1450281 1771031 1525957 4819156 10973812 1407387 1450281 1771031 1525957 4819156 10973812 4498788 6475024 108120 139347 124182 93561 79185 544395 11518207 2463450 0.56220 0.64840 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true true false false false false true 69439 false false 69439 false SCHEDULE C, PART II-B, LINE 1 DURING 2025, THE US CONGRESS CONSIDERED SEVERAL BILLS THAT WOULD HAVE A POSITIVE IMPACT ON PROVIDING FUNDING FOR RESEARCH INTO A RARE DISEASE AND ON PROVIDING SERVICES FOR THE NEEDS OF CHILDREN WITH DISABILITIES. IN SUPPORT OF THIS LEGISLATION, SOCIETY BOARD MEMBERS CONTACTED LEGISLATIVE OFFICES BY PHONE, MAIL, AND PERSONAL VISITS AND PROVIDED SUCH INFORMATION TO SOCIETY MEMBERS VIA NEWSLETTERS AND EMAIL. SUCH LEGISLATION IS OF DIRECT INTEREST TO THE SOCIETY AND ITS MEMBERS. SUCH ACTIVITIES REPRESENT AN INSUBSTANTIAL PART OF ITS TOTAL EFFORTS. THE TOTAL FUNDS EXPENDED ON THESE ACTIVITIES IS LESS THAN 4% OF THE SOCIETY'S TOTAL REVENUE. 1578914 1750 202674 80012 16123 1687203 1423581 500 219087 49048 15206 1578914 1297269 186665 47209 13144 1423581 1554867 -244235 13363 1297269 1360954 208125 14212 1554867 0.01340 0.98660 false false 47618 37571 10047 19010 528 18482 28529 OPERATING LEASE LIABILITY 94313 94313 X 5484189 -26842 47911 21069 5463120 31474 59653 91127 5554247 2704754 47911 47911 2656843 31474 59653 91127 2747970 SCHEDULE D, PAGE 2, PART V, LINE 4 TO PROVIDE A PERMANENT SOURCE OF FUNDING FOR FAMILY SUPPORT, OPERATIONS AND ADMINSTRATIVE OVERHEAD EXPENSES. SCHEDULE D, PAGE 3, PART X THE SOCIETY EVALUATES ANY UNCERTAIN TAX POSITIONS. ACCORDINGLY, THE SOCIETYS POLICY IS TO RECORD A LIABILITY FOR ANY TAX POSITION TAKEN BY THE SOCIETY, INCLUDING ANY RELATED INTEREST AND PENALTIES, WHEN IT IS MORE LIKELY THAN NOT THE POSITION OF MANAGEMENT WITH RESPECT TO A TRANSACTION OR CLASS OF TRANSACTIONS WILL BE OVERTURNED BY A TAXING AUTHORITY UPON EXAMINATION. MANAGEMENT DOES NOT BELIEVE ANY SIGNIFICANT INCOME TAX UNCERTAINTIES EXIST AS OF DECEMBER 31, 2025 AND 2024. SCHEDULE D, PAGE 4, PART XI, LINE 2D FUNDRAISING EXPENSES NETTED WITH REVENUE 47,911 SCHEDULE D, PAGE 4, PART XI, LINE 4B REFUND OF PRIOR YEAR GRANTS PAID OUT 59,653 SCHEDULE D, PAGE 4, PART XII, LINE 2D FUNDRAISING EXPENSES NETTED WITH REVENUE 47,911 SCHEDULE D, PAGE 4, PART XII, LINE 4B REFUND OF PRIOR YEAR GRANTS PAID OUT 59,653 true EUROPE GRANTMAKING MEDICAL RESEARCH 50000 50000 50000 EUROPE GENERAL RESEARCH 50000 1 false false false false false false SCHEDULE F, PAGE 1, PART I, LINE 2 THE GRANTS PROVIDED FOR USE OUTSIDE THE UNITED STATES ARE FOR A TWO YEAR PERIOD. A PROGRESS REPORT IS DUE AT THE END OF THE FIRST YEAR AND MUST BE RECEIVED BY THE NATIONAL MPS SOCIETY BEFORE THE SECOND YEAR OF FUNDING IS GRANTED. A FINAL PROGRESS REPORT IS DUE AT THE END OF THE SECOND YEAR. SCHEDULE F, PAGE 1, PART I, LINE 3 EUROPE 50,000 0 MASQUERADE GALA 439906 346072 93834 40642 51882 7950 64700 ANNUAL FUND 336558 336558 3785 38 409209 350157 59052 16450 4852 1925 135760 1185673 1032787 152886 57092 56734 9875 204245 327946 -175060 true UNIVERSITY OF MINNESOTA FOUNDATION 420 DELAWARE STREET SE MINNEAPOLIS MN 55455 416042488 501C3 12500 MEDICAL RESEARCH GREENWOOD GENETIC CENTER INC 101 GREGOR MENDEL CIRCLE GREENWOOD SC 29646 570604070 501C3 50000 MEDICAL RESEARCH REGENTS OF THE UNIV OF CALIFORNIA SAN DIEGO 9500 GILMAN DRIVE MC 0934 LA JOLLA CA 92093 956006144 501C3 100000 MEDICAL RESEARCH MASSACHUSETTS EYE & EAR INFIRMARY 243 CHARLES STREET BOSTON MA 021143002 042103591 501C3 22725 MEDICAL RESEARCH STANFORD UNIVERSITY 415 BROADWAY 3RD FLOOR REDWOOD CITY CA 94063 941156365 501C3 50000 MEDICAL RESEARCH CROSSWALKS THERAPEUTICS INC 790 MEMORIAL DRIVE SUITE 302 CAMBRIDGE MA 02139 932579229 50000 MEDICAL RESEARCH 5 1 CONTINUING EDUCATION 21 47500 EMERGENCY RELIEF PROGRAM 2 2000 FAMILY ASSISTANCE PROGRAM 12 21796 JOURNEY PROGRAM 7 1420 MEDICAL TRAVEL ASSISTANCE 28 16434 BEREAVEMENT PROGRAM 20 15023 EXTENDED HOSPITAL RELIEF 7 3500 TRAVEL SCHOLARSHIP 26 20091 PATHWAYS OUTREACH PROGRAM 5 20556 EXTRAORDINARY EXPERIENCES 2 1195 URGENT NEED 9 4848 SCHEDULE I, PAGE 1, PART I, LINE 2 FOR RESEARCH GRANTS: AS FUNDS BECOME AVAILABLE, THE SOCIETY ANNOUNCES REQUESTS FOR LETTERS OF INTENT THROUGH OUR WEBSITE, SOCIAL MEDIA, AND EMAIL. UPON RECEIVING FUNDING PROPOSALS, THE SOCIETY FORWARDS SUCH PROPOSALS TO A SUBCOMMITTEE OF THE SCIENTIFIC ADVISORY BOARD FOR REVIEW AND EVALUATION. THE SOCIETY AWARDS GRANTS BASED ON THE MERIT OF THE PROPOSAL AND THE GUIDANCE OF THE SCIENTIFIC ADVISORY BOARD. FOR INDIVIDUAL SUPPORT GRANTS: APPLICATIONS ARE AVAILABLE ONLINE FOR MEMBERS AND INCLUDE CRITERIA GUIDELINES. THE FAMILY PROGRAM DIRECTOR PROVIDES ANONYMOUS INFORMATION TO THE FAMILY SUPPORT COMMITTEE WHO REVIEWS THE APPLICATIONS FOR ASSISTANCE. THE COMMITTEE MEETS REGULARLY AND MINUTES ARE TAKEN ON THE MEETINGS. THE FAMILY PROGRAM DIRECTOR MAINTAINS A LIST OF RECIPIENTS, AMOUNTS AWARDED, AND PURPOSE. BOTH GRANT PROGRAMS UTILIZE AN ONLINE MANAGEMENT SYSTEM FOR GRANT APPLICATIONS. X false false false false false false false false false TERRI KLEIN PRESIDENT & CEO 150391 6000 4692 161083 STEVE HOLLAND BOARD RELATION 550 GRANT TRAVEL STEVEN CHESSER BOARD RELATION 550 GRANT TRAVEL X 7 71540 FMV X MISC ITEMS 5 1370 FMV false true false FORM 990, PAGE 2, PART III, LINE 4B THE NATIONAL MPS SOCIETY PROVIDES COMPREHENSIVE SUPPORT TO FAMILIES AFFECTED BY MPS AND ML THROUGH ITS FAMILY SUPPORT AND PATHWAYS PROGRAMS. AT THE TIME OF DIAGNOSIS AND BEYOND, LICENSED SOCIAL WORKERS ENGAGE FAMILIES THROUGH IN-HOME VISITS AND ONGOING GUIDANCE, HELPING THEM NAVIGATE THE COMPLEX CHALLENGES OF LIVING WITH A RARE DISEASE. THE SOCIETY ALSO OFFERS CRITICAL FINANCIAL ASSISTANCE, INCLUDING FUNDING FOR MEDICAL EQUIPMENT, EDUCATIONAL AND BEREAVEMENT SCHOLARSHIPS, EXTENDED HOSPITAL STAYS, MEDICAL TRAVEL, AND CONFERENCE PARTICIPATION. THESE SERVICES ENSURE FAMILIES RECEIVE COMPASSIONATE, PRACTICAL SUPPORT. IN THE CROSSING PATHS PROGRAM EXPANDS EQUITABLE ACCESS TO EDUCATION, CLINICAL STUDIES, AND CRITICAL RESOURCES FOR FAMILIES AFFECTED BY MPS AND ML IN UNDERSERVED INNER-CITY AND RURAL COMMUNITIES. THROUGH OUTREACH, PARTNERSHIPS, AND TAILORED SUPPORT, THE PROGRAM BRIDGES GEOGRAPHIC AND SOCIOECONOMIC BARRIERS, ENSURING FAMILIES HAVE THE KNOWLEDGE AND OPPORTUNITIES TO PARTICIPATE IN CLINICAL RESEARCH AND RECEIVE SPECIALIZED CARE. FORM 990, PART VI STEVE HOLLAND, CHAIRMAN AND AMY HOLLAND, DIRECTOR HAVE A FAMILY RELATIONSHIP. SCOTT HOPKINS, DIRECTOR AND LYNN HOPKINS, DIRECTOR HAVE A FAMILY RELATIONSHIP. EACH OF THESE FAMILY RELATIONSHIPS CONSTITUTES ONE DIRECTOR VOTE OUT OF 12 DIRECTOR VOTES. FORM 990, PAGE 6, PART VI, LINE 6 AS A NOT-FOR-PROFIT CORPORATION, WE HAVE MEMBERS. FORM 990, PAGE 6, PART VI, LINE 11B PRIOR TO FILING THE RETURN, ELECTRONIC COPIES OF FORM 990 ARE SENT TO ALL MEMBERS OF THE EXECUTIVE COMMITTEE AS WELL AS TO ALL MEMBERS OF THE GOVERNING BODY FOR THEIR REVIEW. AFTER THE FORM 990 HAS BEEN REVIEWED, ALL MEMBERS OF THE GOVERNING BODY WILL DISCUSS AND APPROVE THE IRS FORM 990. FORM 990, PAGE 6, PART VI, LINE 12C THE CONFLICT OF INTEREST POLICY IS A SELF-COMPLIANCE PROCESS. ALL OFFICERS, DIRECTORS, AND EMPLOYEES SIGN THE CONFLICT OF INTEREST POLICY ON AN ANNUAL BASIS. FORM 990, PAGE 6, PART VI, LINE 15A IN DETERMINING THE COMPENSATION FOR THE CEO/PRESIDENT, THE GOVERNANCE COMMITTEE PERFORMS AN ANNUAL REVIEW. FOLLOWING THE GOVERNANCE COMMITTEE REVIEW, THE EXECUTIVE COMMITTEE AND BOARD OF DIRECTORS REVIEW AND DELIBERATE REGARDING THE COMPENSATION. FORM 990, PAGE 6, PART VI, LINE 15B IN DETERMINING THE COMPENSATION FOR THE OTHER OFFICERS AND KEY EMPLOYEES, THE CEO/PRESIDENT PERFORMS AN ANNUAL REVIEW. FOLLOWING THE CEO'S REVIEW, THE GOVERNANCE COMMITTEE AND BOARD OF DIRECTORS REVIEW AND DELIBERATE REGARDING COMPENSATION. FORM 990, PAGE 6, PART VI, LINE 17 MARYLAND, MAINE, MICHIGAN, MINNESOTA, MISSISSIPPI, NORTH CAROLINA, NORTH DAKOTA, NEW HAMPSHIRE, NEW JERSEY, NEW MEXICO, NEVADA, NEW YORK, OHIO, OKLAHOMA, OREGON, PENNSYLVANIA, RHODE ISLAND, SOUTH CAROLINA, TENNESSEE, UTAH, VIRGINIA, WASHINGTON, WISCONSIN, WEST VIRGINIA FORM 990, PAGE 6, PART VI, LINE 19 DONATIONS ARE LISTED IN THE ONLINE PUBLICATION QUARTERLY. THE BUDGET IS PUBLISHED SHORTLY AFTER IT IS APPROVED. THE ORGANIZATION'S ANNUAL REPORT IS MAILED TO MEMBERS AND DONORS ONCE A YEAR, AND THE IRS FORM 990 IS AVAILABLE ON THE WEBSITE. THE ORGANIZATION'S BY-LAWS ARE AVAILABLE ONLINE. INFORMATION IS ALSO AVAILABLE ON THE CHARITY NAVIGATOR WEBSITE. DOCUMENTS ARE ALSO AVAILABLE UPON REQUEST. FORM 990, PART VII SCOTT LOILER REPLACED MATTHEW ELLINWOOD AS CSO IN APRIL 2025. FORM 990, PART XI, LINE 9 FUNDRAISING EXPENSES NETTED WITH REVENUE 47,911 REFUND OF PRIOR YEAR GRANTS PAID OUT -59,653 FUNDRAISING EXPENSES NETTED WITH REVENUE -47,911 REFUND OF PRIOR YEAR GRANTS PAID OUT 59,653