2023-07-11T07:17:44-07:00 2022-12-31 030483170 CEA Scholtes and Associates 106 Tunbridge Rd Baltimore MD 21212 990 2022-01-01 264614274 EVERYLIFE FOUNDATION FOR RARE DISEASES EVER 2026977273 1012 14TH STREET NW 500 WASHINGTON DC 20005 JULIA JENKINS Executive Director 2023-07-11 true JULIA JENKINS 999009999 true CHRIS SCHOLTES CPA P01607734 4103230010 2 AAL1 IAL1 FAL1 2022 2023-04-26 12:10:37Z JULIA JENKINS 5817282 false X WWW.EVERYLIFEFOUNDATION.ORG X 2009 CA 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. 14 13 19 15 0 5430896 5643088 0 1327 31173 47014 115000 5479237 5789261 671510 421405 0 2185913 2882770 0 351632 2230611 2488456 5088034 5792631 391203 -3370 4550600 4495405 1161900 1254443 3388700 3240962 INFORMATION REGARDING THE FOUNDATION'S PROGRAMS CAN BE OBTAINED AT WWW.EVERYLIFEFOUNDATION.ORG. false false 2005520 67425 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. 1569537 193846 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. 784769 160134 17000 THE EVERYLIFE FOUNDATION FOR RARE DISEASES IS A 501C3 NONPROFIT, NONPARTISAN ORGANIZATION DEDICATED TO EMPOWERING THE RARE DISEASES PATIENT COMMUNITY TO ADVOCATE FOR IMPACTFUL, SCIENCE-DRIVEN LEGISLATION AND POLICY THAT ADVANCES THE EQUITABLE DEVELOPMENT OF AND ACCESS TO LIFESAVING DIAGNOSES, TREATMENTS AND CURES. WE DO NOT SPEAK FOR PATIENTS. WE PROVIDE THE TRAINING, EDUCATION, RESOURCES AND OPPORTUNITIES TO MAKE THEIR VOICES HEARD. BY ACTIVATING THE PATIENT ADVOCATE, WE CAN CHANGE PUBLIC POLICY AND SAVE LIVES. 4359826 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 false true false false false false false false false false false false false false false false false false false true 41 0 false 19 true false false false false false false false 0 false false false false false false false X 14 13 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 Julia Jenkins President & Executive Dir. 40.00 0.00 X X 243797 0 18332 Annie Kennedy Policy & Advocacy 40.00 0.00 233456 0 15338 Megan Pinegar COO 40.00 0.00 144613 0 9725 Jamie Sullivan Sr. Dir of Policy 40.00 0.00 130486 0 8504 Mary Roth Communications 40.00 0.00 122579 0 11721 Britta Dornan communications 40.00 0.00 112779 0 16030 Mark Dant Chairman 5.00 0.00 X X 0 0 0 Frank Sasinowski Vice Chairman 1.00 0.00 X X 0 0 0 Vicky Seyfert-Margolis Treasurer 1.00 0.00 X X 0 0 0 Jennifer Bernstein Secretary 1.00 0.00 X X 0 0 0 Amrit Ray Director 1.00 0.00 X 0 0 0 Ritu Baral Director 1.00 0.00 X 0 0 0 Emil Kakkis Director 1.00 0.00 X 0 0 0 Richard Finkel Director 1.00 0.00 X 0 0 0 Stephen Groft Director 1.00 0.00 X 0 0 0 Abbey Hauser Director 1.00 0.00 X 0 0 0 Lisa Carlton Director 1.00 0.00 X 0 0 0 Cristina Casanova Might Director 1.00 0.00 X 0 0 0 Merrill Friedman Director 1.00 0.00 X 0 0 0 987710 79650 6 false true false 0 1538250 4104838 5643088 0 31465 31465 0 0 98000 98000 98000 98000 27729 28021 -292 -292 -292 0 0 0 OTHER INCOME 900099 17000 17000 17000 5789261 17000 129173 X 416405 416405 5000 5000 0 0 262129 156359 78359 27411 0 2127285 1268920 635911 222454 121185 72286 36226 12673 212029 126475 63382 22172 160142 95524 47871 16747 0 944 944 55137 55137 140205 140205 0 5846 5846 788545 765537 21935 1073 26134 19507 6627 68387 58792 7080 2515 182862 165736 8512 8614 0 251689 190728 43260 17701 338267 291874 37517 8876 0 487555 486602 953 0 0 8975 5592 2399 984 7238 4509 1935 794 MISCELLANEOUS 76257 46593 29664 Printing and Publications 34214 33449 428 337 PAYROLL SERVICE FEE 14274 8515 4267 1492 BANK CHARGES AND FEES 1927 1218 500 209 0 5792631 4359826 1081173 351632 2185075 2158760 0 911900 700518 2678 6615 0 0 0 0 160493 147552 46264 27486 27753 18778 1249338 1130116 0 0 0 13363 333066 4550600 4495405 817709 591225 295400 307450 4300 6500 44491 349268 1161900 1254443 X 1548450 1874297 1840250 1366665 3388700 3240962 4550600 4495405 -3370 -144368 X false true X true false X 2842619 4718319 4349291 5430896 5643088 22984213 0 0 2842619 4718319 4349291 5430896 5643088 22984213 5533065 17451148 177 39679 59197 46526 129465 275044 0 4652 13764 17000 35416 23294673 115852 0.74910 0.72690 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false false 140205 140205 5652426 5792631 439632 109908 false 314798 350263 404402 439632 1509095 2263643 22500 69949 197058 140205 429712 78700 87566 101101 109908 377275 565913 18046 12487 5559 28218 14999 13219 18778 FACILITY DEPOSIT 13363 RIGHT OF USE ASSETS - OPERATING LEASES 319703 333066 LEASE LIABILITIES - OPERATING 349268 349268 X 5640272 -144368 1225 -143143 5783415 5846 5846 5789261 5788010 1225 1225 5786785 5846 5846 5792631 Part X : FIN48 Footnote For the year ended December 31, 2022, 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 1 Scholarship Way St Peter MN 56082 042296967 501(C)(3) 405000 0 scholarships 1 0 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 Annie Kennedy Policy & Advocacy 233456 15338 248794 Julia Jenkins President & Executive Dir. 243797 18332 262129 Megan Pinegar COO 144613 9725 154338 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 MANAGEMENT, AUDIT COMMITTEE, AND THE EXECUTIVE DIRECTOR. 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 NOVATO, CALIFORNIA.