2024-08-12T10:12:54-04:00 2023-12-31 561743537 LANGDON & COMPANY LLP 223 US HIGHWAY 70 EAST SUITE 100 GARNER NC 275294051 990 2023-01-01 112734849 NATIONAL MPS SOCIETY INC NATI 9198060101 PO BOX 14686 DURHAM NC 27709 LYNN SCOTT HOPKINS TREASURER 9198060101 2024-08-09 true true SUSAN DEAN P01281194 9196621001 2024-08-09 2023 2024-08-08 14:25:15Z TERRI KLEIN 1007 SLATER ROAD 220 DURHAM NC 27703 3511790 false X WWW.MPSSOCIETY.ORG X 1985 NY THE NATIONAL MPS SOCIETY EXISTS TO CURE, SUPPORT, AND ADVOCATE FOR MUCOPOLYSACCHARIDOSIS (MPS) AND MUCOLIPIDOSIS (ML). 14 14 11 75 0 1450281 1771031 332384 451952 30690 107962 23831 -34286 1837186 2296659 1012145 565222 0 724552 787012 0 219665 949759 1406027 2686456 2758261 -849270 -461602 4525008 4013909 593805 286091 3931203 3727818 THE NATIONAL MPS SOCIETY EXISTS TO CURE, SUPPORT, AND ADVOCATE FOR MUCOPOLYSACCHARIDOSIS (MPS) AND MUCOLIPIDOSIS (ML). false false 631756 419242 THE SOCIETY FUNDED APPROXIMATELY 9 RESEARCH GRANTS DURING 2023 FOR THE PURPOSE OF FINDING TREATMENTS AND CURES FOR MPS AND RELATED DISEASES. 350109 145980 THE SOCIETY PROVIDED MEDICAL EQUIPMENT SCHOLARSHIPS, FUNERAL EXPENSE GRANTS, EDUCATION SCHOLARSHIPS, MEDICAL TRAVEL & EXTENDED HOSPITAL STAY ASSISTANCE, AND TRAVEL TO CONFERENCES SCHOLARSHIPS FOR THE PURPOSE OF PROVIDING FAMILY SUPPORT FOR PEOPLE AND THEIR FAMILIES WHO ARE IN SOME WAY AFFECTED BY MPS. 1260456 451952 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). 2242321 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 false false false false false false false false false true 25 0 true 11 true false false false false false false false false false false false false X 14 14 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 MATTHEW ELLINWOOD CSO 40.00 X 162589 0 4878 TERRI KLEIN PRESIDENT & 55.00 X 130785 0 3815 NICOLE BENNETT DIRECTOR 1.00 X 0 0 0 MAUREEN COTE SECRETARY 1.00 X X 0 0 0 STEPHANIE COZINE DIRECTOR 1.00 X 0 0 0 TAMARA CULLERE DIRECTOR 1.00 X 0 0 0 STEVE AMY HOLLAND VICE CHAIRMA 1.00 X X 0 0 0 LYNN SCOTT HOPKINS TREASURER 1.00 X X 0 0 0 AUSTIN NOLL DIRECTOR 1.00 X 0 0 0 LISA TODD BOARD CHAIRM 1.00 X X 0 0 0 SHERI WISE DIRECTOR 1.00 X 0 0 0 MERCEDES JOHNSON DIRECTOR 1.00 X 0 0 0 CARL KAPES 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 STACEY MONTGOMERY DIRECTOR 1.00 X 0 0 0 293374 8693 2 false true false 3589 2150 787499 977793 3318 1771031 CONFERENCE INCOME 451952 451952 451952 124182 124182 1043626 1059846 -16220 -16220 -16220 120999 787499 155285 -34286 2296659 435732 124182 369242 369242 145980 145980 50000 50000 302065 180954 58566 62545 381547 228567 73978 79002 10729 6427 2080 2222 38550 23094 7474 7982 54121 32422 10493 11206 32915 32915 81076 81076 30779 30779 91879 55743 21795 14341 91294 45472 25680 20142 61419 36852 24567 121266 121266 453659 453659 7176 4305 2871 7060 4236 2824 SPONSORED EXPENSES 372126 372126 DUES AND SUBSCRIPTIONS 49484 25006 2253 22225 BEREAVEMENT 5894 5894 2758261 2242321 296275 219665 114068 169899 855891 460922 85837 9971 25833 34545 78725 41293 11812 37432 3193143 3114291 238424 186849 4525008 4013909 189041 45304 50000 170000 234764 190787 593805 286091 X 1926230 1665445 2004973 2062373 3931203 3727818 4525008 4013909 X -461602 258217 X false true X true false X 2345162 1946146 1407387 1450281 1771031 8920007 2345162 1946146 1407387 1450281 1771031 8920007 2819736 6100271 121352 87499 108120 139347 124182 580500 9500507 1917149 0.64210 0.71020 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true true false false false false true 81076 false false 81076 false SCHEDULE C, PART II-B, LINE 1 DURING 2023, 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. 1297269 186665 47209 13144 1423581 1554867 -244235 13363 1297269 1360954 208125 14212 1554867 1315350 58079 12476 1360954 1111248 13878 201106 10882 1315350 0.01250 0.98750 false false 44509 37641 6868 34216 3652 30564 37432 OPERATING LEASE LIABILITY 190787 190787 X 2568541 258217 44444 302661 2265880 30779 30779 2296659 2771926 44444 44444 2727482 30779 30779 2758261 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, 2023 AND 2022. SCHEDULE D, PAGE 4, PART XI, LINE 2D FUNDRAISING EXPENSES NETTED WITH REVENUE 44,444 SCHEDULE D, PAGE 4, PART XII, LINE 2D FUNDRAISING EXPENSES NETTED WITH REVENUE 44,444 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 ANNUAL FUND 339731 339731 GALA 214189 153179 61010 25355 29846 10985 36641 36 354578 294589 59989 13881 3876 1983 32718 908498 787499 120999 39236 33722 12968 69359 155285 -34286 true TRUSTEES OF UNIVERSITY OF PA 3451 WALNUT STREET PHILADELPHIA PA 19104 231352685 501C3 75000 MEDICAL RESEARCH UNIVERSITY OF MINNESOTA FOUNDATION 420 DELAWARE STREET SE MINNEAPOLIS MN 55455 416042488 501C3 25000 MEDICAL RESEARCH IOWA STATE UNIVERSITY 515 MORRILL ROAD AMES IA 50011 426004224 501C3 27709 MEDICAL RESEARCH REGENTS OF THE UNIV OF MINNESOTA 200 OAK STREET SE MINNEAPOLIS MN 55455 416007513 501C3 41533 MEDICAL RESEARCH RESEARCH TRIANGLE INSTITUTE 3040 CORNWALLIS DRIVE RESEARCH TRIANGLE PARK NC 27709 560686338 501C3 100000 MEDICAL RESEARCH THE NEMOURS FOUNDATION 10140 CENTURION PARKWAY NORTH JACKSONVILLE FL 32256 590634433 501C3 50000 MEDICAL RESEARCH REGENTS UNIVERSITY OF CALIFORNIA SAN FRANCISCO 490 ILLINOIS STREET 4TH FLOOR SAN FRANSISCO CA 94143 946036493 501C3 50000 MEDICAL RESEARCH 7 CONTINUING EDUCATION 30 48000 EMERGENCY RELIEF PROGRAM 1 1000 FAMILY ASSISTANCE PROGRAM 7 12939 JOURNEY PROGRAM 9 2472 MEDICAL TRAVEL ASSISTANCE 24 11915 BEREAVEMENT PROGRAM 23 17272 EXTENDED HOSPITAL RELIEF 5 2500 TRAVEL SCHOLARSHIP 38 25185 REGIONAL GET-TOGETHERS 2 856 SPIRIT SCHOLARSHIP 9 6080 PATHWAYS OUTREACH PROGRAM 5 17761 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 MATTHEW ELLINWOOD CSO 156589 6000 4878 167467 JACK TODD BOARD RELATION 1000 SCHOLARSHIP EDUCATION PATRICIA ESPINAL BOARD RELATION 410 TRAVEL SPIRIT CONFERENCE FORM 990, PART VI STEVE HOLLAND, VICE CHAIRMAN AND AMY HOLLAND, DIRECTOR HAVE A FAMILY RELATIONSHIP. SCOTT HOPKINS, DIRECTOR AND LYNN HOPKINS, TREASURER HAVE A FAMILY RELATIONSHIP. EACH OF THESE FAMILY RELATIONSHIPS CONSTITUTES ONE DIRECTOR VOTE OUT OF 14 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. IN DETERMINING THE COMPENSATION FOR THE OTHER OFFICERS AND KEY EMPLOYEES, THE CEO/PRESIDENT PERFORMS AN ANNUAL REVIEW. FOLLOWING THE CEO'S REVIEW, THE EXECUTIVE COMMITTEE AND BOARD OF DIRECTORS REVIEW AND DELIBERATE REGARDING 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 EXECUTIVE 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 XI, LINE 9 FUNDRAISING EXPENSES NETTED WITH REVENUE 44,444 FUNDRAISING EXPENSES NETTED WITH REVENUE -44,444