2025-07-23T11:00:55-07:00 2024-12-31 030483170 C E A SCHOLTES AND ASSOCIATES 106 TUNBRIDGE ROAD BALTIMORE MD 21212 990 2024-01-01 264614274 EVERYLIFE FOUNDATION FOR RARE DISEASES EVER 2026977273 1012 14TH STREET NW 500 WASHINGTON DC 20005 Michael Pearlmutter CEO 2025-07-23 true true CHRIS SCHOLTES CPA P01607734 4103230010 2024 2025-03-06 01:10:19Z Michael Pearlmutter 1012 14TH STREET NW 500 WASHINGTON DC 20005 7031574 false X WWW.EVERYLIFEFOUNDATION.ORG X 2009 MD THE EVERYLIFE FOUNDATION FOR RARE DISEASES IS DEDICATED TO ADVANCING THE DEVELOPMENT OF TREATMENT AND DIAGNOSTIC OPPORTUNITIES FOR RARE DISEASE PATIENTS THROUGH SCIENCE-DRIVEN PUBLIC POLICY. 9 9 31 15 0 6643478 4869118 1917750 51937 129792 99229 114914 6794644 7031574 446372 622000 0 3002810 3338258 0 519051 2607933 2881427 6057115 6841685 737529 189889 5806862 6217588 1807815 2009473 3999047 4208115 INFORMATION REGARDING THE FOUNDATION'S PROGRAMS CAN BE OBTAINED AT WWW.EVERYLIFEFOUNDATION.ORG. false false 2217036 1917750 THE POLICY PRIORITIES AND INITIATIVES OF THE EVERYLIFE FOUNDATION ARE IDENTIFIED BY THE EVERYLIFE FOUNDATION COMMUNITY CONGRESS, TO ENSURE THAT OUR POLICY PRIORITIES REFLECT THE MOST PRESSING NEEDS OF THE COMMUNITY. A MEMBERSHIP-BASED PROGRAM DEDICATED TO COLLABORATIVELY BRINGING PATIENT ORGANIZATIONS, INDUSTRY LEADERS, AND OTHER RARE DISEASE STAKEHOLDERS TOGETHER, THE COMMUNITY CONGRESS ACTS AS A STRATEGIC ADVISORY COUNCIL, PROVIDING ADVICE AND INSIGHT ON URGENT POLICY ISSUES IMPACTING THE RARE DISEASE COMMUNITY. 1735071 RARE DISEASE LEGISLATIVE ADVOCATES - RARE DISEASE LEGISLATIVE ADVOCATES RDLA IS A COLLABORATIVE PROGRAM DESIGNED TO SUPPORT THE ADVOCACY OF ALL RARE DISEASE GROUPS. RDLA WORKS TO EMPOWER THE INDIVIDUAL TO BECOME AN ADVOCATE BY PROVIDING INFORMATIONAL MEETINGS, LEGISLATIVE RESOURCES, ADVOCACY TOOLS, AND SPECIAL EVENTS THAT SUPPORT ORGANIZATIONS AND ADVOCATES WORKING TO PROMOTE RARE DISEASE LEGISLATION. RDLA'S GOAL IS TO BRING THE RARE DISEASE COMMUNITY TOGETHER, GROW THE PATIENT ADVOCACY COMMUNITY AND WORK COLLECTIVELY TO ENSURE THAT THE MANY VOICES OF PATIENTS WITH RARE DISEASES HAVE AN OPPORTUNITY TO BE HEARD IN STATE GOVERNMENT AND ON CAPITOL HILL. 867536 622000 11354 Patient programs and opportunities for patient engagement and community including an artist contest, collaborative workspace, and communications tools. 4819643 true true false true false false false false false false true false false true true true true false false false false false false false false false false true true true false false false false false false false false false false false false false false false false false true 40 0 false 31 true false false false false false false false 0 false false false false false false false X 9 9 false false false false false false false true true false false true true true true true true true true false CA X X CEA SCHOLTES AND ASSOCIATES 4103230010 106 TUNBRIDGE ROAD BALTIMORE MD 21212 Anne Kennedy Policy & Advocacy 40.00 0.00 259793 0 19874 Michael Pearlmutter CEO 40.00 0.00 X 201335 0 8960 Megan Pinegar COO 40.00 0.00 192408 0 12475 Jamie Sullivan Sr. Dir of Policy 40.00 0.00 151230 0 13160 Edward Brasfield Sr Dir of Develop 40.00 0.00 132484 0 9192 Shannon Von Felden Sr Director of Adv 40.00 0.00 127440 0 14160 Vicky Seyfert-Margolis Chair 2.00 0.00 X X 0 0 0 Frank Sasinowski Vice Chair 2.00 0.00 X X 0 0 0 Stephen Groft Treasurer 2.00 0.00 X X 0 0 0 Jennifer Bernstein Secretary 2.00 0.00 X X 0 0 0 Amrit Ray - until 224 Director 2.00 0.00 X 0 0 0 Ritu Baral Director 2.00 0.00 X 0 0 0 Shandra Trantham Director 2.00 0.00 X 0 0 0 Abbey Hauser Director 2.00 0.00 X 0 0 0 Lisa Carlton Director 2.00 0.00 X 0 0 0 Cristina Casanova Might - until 122 Director 2.00 0.00 X 0 0 0 Merrill Friedman Director 2.00 0.00 X 0 0 0 1064690 77821 6 false true false Zuckerman Gravely Management 2 Wisconsin Circle Suite 1050 Chevy Chase MD 20815 Rent 241088 Faegre Drinker Biddle & Reath PO Box 856522 Minneapolis MN 55485 Consulting and Lobbying 154485 2 4869118 4869118 MEMBERSHIP DUES 900099 1917750 1917750 1917750 129792 129792 0 0 103560 103560 103560 103560 0 0 0 0 OTHER INCOME 900099 11354 11354 11354 7031574 1929104 233352 X 615000 615000 7000 7000 0 0 210295 107543 77774 24978 0 2338744 1042920 984259 311565 140895 99384 30808 10703 451879 318744 98808 34327 196445 138568 42955 14922 0 7032 1881 4706 445 64515 17257 43173 4085 176944 176944 0 8945 8945 825022 760423 49531 15068 6096 6096 38303 26922 8353 3028 296169 260040 11798 24331 0 260341 180172 58755 21414 567392 507653 30011 29728 0 472300 465610 6690 0 0 6100 3190 2155 755 8505 4517 2919 1069 MISCELLANEOUS 76026 36752 37799 1475 Postage and Shipping 43053 29472 1626 11955 PAYROLL SERVICE FEE 19209 9823 7104 2282 AWARDS 2757 2757 2718 975 1512 231 6841685 4819643 1502991 519051 2783412 490278 0 525050 509648 387 7660 0 0 0 0 149331 239752 54384 42507 9857 11877 1196875 4036902 0 0 0 1141950 921471 5806862 6217588 334850 535389 338000 542250 7675 9475 1127290 922359 1807815 2009473 X 2320714 2799782 1678333 1408333 3999047 4208115 5806862 6217588 189889 19179 X false true X true false X 4349291 5430896 5643088 6643478 4869118 26935871 0 0 4349291 5430896 5643088 6643478 4869118 26935871 5986377 20949494 59197 46526 129465 141213 233352 609753 0 13764 17000 10334 11354 52452 27598076 1918249 0.75910 0.73980 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false false 176944 176944 6664741 6841685 492084 123021 false 404402 439632 452856 492084 1788974 2683461 197058 140205 116164 176944 630371 101101 109908 113214 123021 447244 670866 18046 17581 465 36338 24926 11412 11877 FACILITY DEPOSIT 13363 RIGHT OF USE ASSETS - OPERATING LEASES 908108 921471 LEASE LIABILITIES - OPERATING 922359 922359 X 7041808 19179 19179 7022629 8945 8945 7031574 6832740 6832740 8945 8945 6841685 Part X : FIN48 Footnote For the year ended December 31, 2024, the Foundation has documented its consideration of FASB ASC 740-10, Income Taxes, that provides guidance for reporting uncertainty in income taxes and has determined that no material uncertain tax positions qualify for either recognition or disclosure in the financial statements. true Scholarship America 7900 International Dr 500 Minneapolis MN 55425 042296967 501(c)(3) 615000 0 scholarships 1 0 2024 Rare Artist Award 12 7000 Grantmaker's Description of How Grants are Used EVERYLIFE FOUNDATION FOR RARE DISEASES REQUIRES ONGOING FEEDBACK IN THE FORM OF ORAL AND WRITTEN REPORTS IN ORDER TO MONITOR THE PROGRESS OF EACH GRANT DISTRIBUTION. X X X X false false false false false false false false false Anne Kennedy Policy & Advocacy 259793 19874 279667 Jamie Sullivan Sr. Dir of Policy 151230 13160 164390 Megan Pinegar COO 192408 12475 204883 Michael Pearlmutter CEO 201335 8960 210295 Form 990, Part VI, Section B, Line 11b FORM 990 IS PREPARED BY AN OUTSIDE TAX PROFESSIONAL. THE FORM IS THEN REVIEWED BY THE ORGANIZATION'S treasurer, audit committee, and Chief Executive Officer. THIS GROUP OF INDIVIDUALS THEN DISCUSSES THE CONTENTS OF THE RETURN WITH THE OUTSIDE TAX PROFESSIONAL. AFTER A FULL REVIEW, THE FINAL VERSION OF THE TAX RETURN IS PROVIDED TO ALL MEMBERS OF THE ORGANIZATION'S VOTING BODY. A REPRESENTATIVE OF MANAGEMENT AUTHORIZES THE FINAL FORM 990 WHICH IS THEN FILED WITH THE INTERNAL REVENUE SERVICE. Form 990, Part VI, Section B, Line 12c MEMBERS OF THE BOARD OF DIRECTORS REVIEW ALL POTENTIAL CONFLICTS OF INTEREST AT LEAST ANNUALLY. ALL PERSONNEL AND BOARD MEMBERS ARE REQUIRED TO DISCLOSE IN WRITING POTENTIAL CONFLICTS AND ANY RELATED PARTY AFFILIATIONS. LOANS BETWEEN THE ORGANIZATION AND MEMBERS OF MANAGEMENT AND THE BOARD ARE STRICTLY PROHIBITED. THE ORGANIZATION SEEKS FULL TRANSPARENCY ON ALL INTEREST AT LEAST ANNUALLY. ANY POTENTIAL CONFLICTS IN FACT OR APPEARANCE ARE DISCUSSED OPENLY AND RESOLVED IN ACCORDANCE WITH THE ORGANIZATION'S POLICIES AND PROCEDURES. Form 990, Part VI, Section B, Line 15a MEMBERS OF THE BOARD OF DIRECTORS REVIEW THE COMPENSATION OF ALL HIGH-LEVEL PERSONNEL PERIODICALLY IN ACCORDANCE WITH IRS RULES AND REGULATIONS. EFFORTS ARE MADE TO SECURE COMPENSATION DATA FROM INDUSTRY SOURCES IN ORDER TO DETERMINE COMPETITIVENESS AND APPROPRIATENESS OF SALARIES. EVERY EFFORT IS MADE TO ENSURE THAT THE PROCESS IS THOROUGH AND TRANSPARENT IN ACCORDANCE WITH IRS GUIDELINES AND THE ORGANIZATION'S POLICIES AND PROCEDURES. COMPENSATION OF OTHER HIGH-LEVEL PERSONNEL AND KEY EMPLOYEES IS REVIEWED PERIODICALLY BY MEMBERS OF MANAGEMENT. EFFORTS ARE MADE TO SECURE COMPENSATION DATA FROM INDUSTRY SOURCES IN ORDER TO DETERMINE COMPETITIVENESS AND APPROPRIATENESS OF SALARIES AND ALL RELATED BENEFITS. ALL DECISIONS ARE THEN DOCUMENTED IN PERSONNEL FILES. Form 990, Part VI, Section C, Line 19 ALL OF THE ORGANIZATION'S GOVERNING DOCUMENTS, FINANCIAL STATEMENTS AND OTHER LEGAL FILINGS ARE MAINTAINED IN A SECURE ENVIRONMENT AND HELD AVAILABLE FOR INSPECTION BY TAX AUTHORITIES AND THE GENERAL PUBLIC. TAX RETURNS ARE POSTED ANNUALLY TO WWW.GUIDESTAR.ORG WHERE THEY ARE AVAILABLE FOR VIEWING AS ELECTRONIC COPIES AND ARE ALSO AVAILABLE FOR A PHYSICAL INSPECTION AT THE ORGANIZATION'S OFFICE IN Washington, DC.