2023-07-20T11:13:53-04:00 2022-12-31 561743537 LANGDON & COMPANY LLP 223 US HIGHWAY 70 EAST SUITE 100 GARNER NC 275294051 990 2022-01-01 112734849 NATIONAL MPS SOCIETY INC NATI 9198060101 PO BOX 14686 DURHAM NC 27709 LYNN SCOTT HOPKINS TREASURER 9198060101 2023-07-13 true LYNN HOPKINS 999009999 true SUSAN DEAN P01281194 9196621001 2023-07-20 2022 2023-04-26 12:10:37Z TERRI KLEIN 1007 SLATER ROAD 220 DURHAM NC 27703 4558767 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 10 75 0 1407387 1450281 167400 332384 222873 30690 105163 23831 1902823 1837186 1122585 1012145 0 585607 724552 0 184010 379187 949759 2087379 2686456 -184556 -849270 5360039 4525008 65979 593805 5294060 3931203 THE NATIONAL MPS SOCIETY EXISTS TO CURE, SUPPORT, AND ADVOCATE FOR MUCOPOLYSACCHARIDOSIS (MPS) AND MUCOLIPIDOSIS (ML). false false 1087908 886520 THE SOCIETY FUNDED APPROXIMATELY 16 RESEARCH GRANTS DURING 2022 FOR THE PURPOSE OF FINDING TREATMENTS AND CURES FOR MPS AND RELATED DISEASES. 313346 125625 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. 848255 332384 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). 2249509 true true false true false false false false false true true false false true true true true false false false true true false false true false false true true true false false false false false false false false false false false false false false false false false true 24 0 true 10 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 AL AK AR CA CO CT FL GA HI IL KS KY ME MD MA MI MN MS NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI X X ANGELA GUAJARDO 9198060101 PO BOX 14686 DURHAM NC 27709 MATTHEW ELLINWOOD CSO 40.00 X 161338 0 4840 TERRI KLEIN PRESIDENT & 55.00 X 133303 0 3999 NICOLE BENNETT DIRECTOR 1.00 X 0 0 0 STEPHANIE BOZARTH DIRECTOR 1.00 X 0 0 0 MAUREEN COTE DIRECTOR 1.00 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 NONI LANGFORD DIRECTOR 1.00 X 0 0 0 AUSTIN NOLL DIRECTOR 1.00 X 0 0 0 CHRISTINE TIPPETT SECRETARY 1.00 X 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 294641 8839 2 false true false 4030 2300 643951 800000 15249 1450281 CONFERENCE INCOME 332384 332384 332384 139347 139347 2548863 2657520 -108657 -108657 -108657 87892 643951 64061 23831 1837186 223727 139347 574020 574020 125625 125625 312500 312500 303479 192318 55823 55338 330153 209222 60729 60202 9768 6190 1797 1781 37700 23891 6935 6874 43452 27536 7993 7923 22566 22566 31243 31243 31252 31252 89061 61576 15632 11853 85338 39811 28066 17461 39294 23577 15717 102005 102005 308260 308260 3824 2295 1529 7074 4245 2829 SPONSORED EXPENSES 185185 185185 DUES AND SUBSCRIPTIONS 36043 11396 2069 22578 BEREAVEMENT 8614 8614 2686456 2249509 252937 184010 187218 114068 1355534 855891 27277 85837 7220 25833 47475 35663 7055 11812 3722988 3193143 52747 238424 5360039 4525008 40979 189041 25000 170000 234764 65979 593805 X 2749238 1926230 2544822 2004973 5294060 3931203 5360039 4525008 X -849270 -513587 X false true X true false X 1524158 2345162 1946146 1407387 1450281 8673134 1524158 2345162 1946146 1407387 1450281 8673134 2103002 6570132 121030 121352 87499 108120 139347 577348 9250482 1639754 0.71020 0.67440 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED true true false false false false true 31243 false false 31243 false SCHEDULE C, PART II-B, LINE 1 DURING 2022, 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 2% OF THE SOCIETY'S TOTAL REVENUE. 1554867 -244235 13363 1297269 1360954 208125 14212 1554867 1315350 58079 12476 1360954 1111248 13878 201106 10882 1315350 1130652 59186 -67440 11150 1111248 0.01180 0.98820 false false 38894 35663 3231 8581 8581 11812 OPERATING LEASE RIGHT-OF-USE 233424 DEPOSITS 5000 238424 OPERATING LEASE LIABILITY 234764 234764 X 1356408 -513587 64061 -449526 1805934 31252 31252 1837186 2719265 64061 64061 2655204 31252 31252 2686456 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 SOCIETY'S POLICY IS TO RECORD A LIABILITY FOR ANY TAX POSITION TAKEN THAT IS BENEFICIAL TO 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, 2022. SCHEDULE D, PAGE 4, PART XI, LINE 2D FUNDRAISING EXPENSES NETTED WITH REVENUE 64,061 SCHEDULE D, PAGE 4, PART XII, LINE 2D FUNDRAISING EXPENSES NETTED WITH REVENUE 64,061 true EAST ASIA AND THE PACIFIC GRANTMAKING MEDICAL RESEARCH 100000 EUROPE GRANTMAKING MEDICAL RESEARCH 212500 312500 312500 EUROPE GENERAL RESEARCH 62500 EAST ASIA AND THE PACIFIC GENERAL RESEARCH 50000 EAST ASIA AND THE PACIFIC GENERAL RESEARCH 50000 EUROPE GENERAL RESEARCH 50000 EUROPE GENERAL RESEARCH 100000 5 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 EAST ASIA AND THE PACIFIC 100,000 0 EUROPE 212,500 0 ANNUAL FUND 324412 324412 120 WALK RUN FUNDRA 172643 84751 87892 8285 3416 4163 26725 34 234788 234788 11712 9640 731843 643951 87892 19997 3416 4163 36485 64061 23831 true TRUSTEES OF UNIVERSITY OF PA 3451 WALNUT STREET PHILADELPHIA PA 19104 231352685 501C3 54020 MEDICAL RESEARCH UNIVERSITY OF MINNESOTA FOUNDATION 200 OAK STREET SE NO 500 MINNEAPOLIS MN 55455 416042488 501C3 25000 MEDICAL RESEARCH GREENWOOD GENETIC CENTER 101 GREGOR MENDEL CIRCLE GREENWOOD SC 29646 570604070 501C3 150000 MEDICAL RESEARCH ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI ONE GUSTAVE LEVY PLAZA PO BOX 1075 NEW YORK NY 10029 136171197 501C3 50000 MEDICAL RESEARCH CHILDREN'S HOSPITAL OF PHILADELPHIA RESEARCH INSTITUTE 2716 SOUTH STREET PHILADELPHIA PA 191462305 231352166 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 REGENTS OF THE UNIV OF MINNESOTA 200 OAK STREET SE MINNEAPOLIS MN 55455 416007513 501C3 145000 MEDICAL RESEARCH 7 CONTINUING EDUCATION 28 43000 EMERGENCY RELIEF PROGRAM 2 1500 FAMILY ASSISTANCE PROGRAM 10 13156 JOURNEY PROGRAM 9 2227 MEDICAL TRAVEL ASSISTANCE 21 8426 BEREAVEMENT PROGRAM 23 17250 EXTRAORDINARY EXPERIENCES 2 1000 EXTENDED HOSPITAL RELIEF 3 1500 TRAVEL SCHOLARSHIP 52 36837 REGIONAL GET-TOGETHERS 1 729 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 150338 5000 6000 4840 166178 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 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. 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, MASSACHUSETTS, MICHIGAN, MINNESOTA, MISSISSIPPI, NEW HAMPSHIRE, NEW JERSEY, NEW MEXICO, NEW YORK, NORTH CAROLINA, NORTH DAKOTA, OHIO, OKLAHOMA, OREGON, PENNSYLVANIA, RHODE ISLAND, SOUTH CAROLINA, TENNESSEE, UTAH, VIRGINIA, WASHINGTON, WEST VIRGINIA, WISCONSIN 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 64,061 FUNDRAISING EXPENSES NETTED WITH REVENUE -64,061