2016-06-08T15:02:57-07:00 2015-12-31 Regalia & Associates CPAs 103 Town Country Dr Ste K Danville CA 94526 990 2015-01-01 264614274 Everylife Foundation for Rare Diseases EVER 4158840223 77 Digital Drive Novato CA 94949 Emil D Kakkis MD President 2016-06-08 true Douglas W Regalia P00186389 9253140390 2015 2016-12-15 16:53:06Z Emil D Kakkis MD PhD 77 Digital Drive 210 Novato CA 94949 1787563 false false X www.everylifefoundation.org X 2009 CA EveryLife Foundation for Rare Dis- eases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We do more with the existing science and bring life-saving treatments to millions of people suffering from rare diseases. 8 7 7 0 1299018 1655552 52609 132011 0 0 1351627 1787563 111859 146312 0 519453 717682 0 151407 583050 835645 1214362 1699639 137265 87924 436978 516371 59429 50898 377549 465473 X Information regarding The Foundation's programs can be obtained at www.everylifefoundation.org false false 675413 Everylife FoundationThe EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. The science exists for many of these diseases to be treated; however, treatments may never be developed because of roadblocks in the development process, such as a lack of investment and a challenging regulatory environment. The Foundation works with Patient Organizations, Industry, Academic Scientists, the Food and Drug (continued on Scedule O) 522019 Rare Disease Legislative AdvocatesRare 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. RDLAs 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. 179171 Italian Street Painting MarinItalian Street Painting Marin (ISPM), the Foundations community outreach program, showcases the fine art of street painting and supports quality arts-based programs in our community, Marin County, California. ISPM holds an annual event spotlighting Madonnari (street painters) from around the world in downtown San Rafael and provides creative opportunities for community members to feature this popular performance art. The Foundation believes the arts enhance, inspire, and change lives. 1376603 true true false true false false false false false false true false false false true true true false false true true 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 false false false false true 10 0 true 7 true false false false false false false false false 0 false false false false false false false false false false X 8 7 true false false false false false false true true false false true true true true true true true true false CA X X Deborah Walter Finance Mgr 4158840223 77 Digital Drive 210 Novato CA 94949 Emil D Kakkis MD PhD President 4.00 0.00 X X 0 0 0 Julia Jenkins Secretary & E.D 40.00 0.00 X X 147000 0 5426 John Klock MD Treasurer 4.00 0.00 X X 0 0 0 Ritu Baral Director 2.00 0.00 X 0 0 0 Mark Dant Director 2.00 0.00 X 0 0 0 David Rowitch MD PhD Director 2.00 0.00 X 0 0 0 Jenny Soriano MD Director 2.00 0.00 X 0 0 0 Matt Wilsey Director 2.00 0.00 X 0 0 0 Max Bronstein Dir of Advocacy 40.00 0.00 X 100000 0 5249 247000 10675 1 false true false Polsinelli PC 3 Embarcadero Center 1350 San Francisco CA 94111 Legal Advocacy 120052 1 1655552 1655552 Earned income from ISP 79986 79986 Ticket Sales 52025 52025 132011 0 0 0 0 0 0 0 0 0 1787563 132011 82513 82513 52900 52900 10899 10899 0 147000 96120 25777 25103 0 464517 296193 90195 78129 0 61300 39326 11625 10349 44865 28783 8509 7573 0 1750 1750 14646 4829 9817 0 0 0 63172 53612 9560 35258 35258 42055 36231 4638 1186 36930 31825 647 4458 0 69526 49893 7818 11815 76060 76060 0 0 0 0 6271 6271 5354 3865 754 735 Program Events 204191 204191 Advocacy 141238 141238 Outside consultants 96944 96944 Postage and Shipping 20018 19469 278 271 22232 14704 5300 2228 1699639 1376603 171629 151407 336097 444739 14 14 65000 30206 0 0 0 0 0 10647 17831 98557 84393 18992 14164 0 0 0 0 6228 9417 436978 516371 19576 27420 39853 23478 59429 50898 X 332549 395473 45000 70000 377549 465473 436978 516371 87924 X false true X true false X 739576 791676 872694 1299018 1655552 5358516 0 0 739576 791676 872694 1299018 1655552 5358516 3251241 2107275 0 0 0 5358516 0.39330 0.30070 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED false false false 169679 150444 196436 516559 774839 100774 5000 698 106472 42420 37611 49109 129140 193710 698 698 30921 24465 6456 67636 59928 7708 14164 Accrued payroll liabilities 23478 23478 X 1762563 45000 45000 1717563 70000 70000 1787563 1699639 1699639 1699639 Part X : FIN48 Footnote Income TaxesFinancial statement presentation follows the recommendations of ASC 740, Income Taxes. Under ASC 740, the Foundation is required to report information regarding its exposure to various tax positions taken by the Foundation and requires a two-step process that separates recognition from measurement. The first step is determining whether a tax position has met the recognition threshold; the second step is measuring a tax position that meets the recognition threshold. Management believes that the Foundation has adequately evaluated its current tax positions and has concluded that as of December 31, 2015, the Foundation does not have any uncertain tax positions for which a reserve or an accrual for a tax liability would be necessary.The Foundation has received notification from the Internal Revenue Service and the State of California that it qualifies for tax-exempt status under Section 501(c)(3) of the Internal Revenue Code and Section 23701d of the California Revenue and Taxation Code. The exemptions are subject to periodic review by the federal and state taxing authorities and management is confident that the Foundation continues to satisfy all federal and state statutes in order to qualify for continued tax exemption status. The Foundation may periodically receive unrelated business income (such as sublease rental income) requiring the Foundation to file separate tax returns under federal and state statutes. Under such conditions, the Foundation calculates and accrues the applicable taxes. Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 Net assets released from restrictions $45000 Part XI, Line 4b: Other revenue amounts included on 990 but not included in F/S Temp Restricted Contributions $70000 true Canada 0 0 Disease Research Grant Award 0 France 0 0 Disease Research Grant Award 10899 10899 10899 false false false false false false Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US A budget is prepared in advance of all grants earmarked for nternational recipients. Individuals working in the designated foreign countries provide ongoing reports regarding progress of work. Expenditures are made against budget amounts and analyzed continuously by US-based management. Discussions, e-mails, and other techniques of communication are employed to ensure that funds are utilized according to the original intent. Accomplishments are documented in writing and submitted by field volunteers to the head office. Part I, Line 3f - Method of Accounting Cash basis method of accounting is used for grants to foreign entities. false Dominican University 50 Acacia Avenue San Rafael CA 94901 941156525 501(c)(3) 6900 0 Global Genes Project 28 Argonaut Suite 150 Aliso Viejo CA 92656 263331487 501(c)(3) 10000 0 Manhattan Institute 52 Vanderbilt Ave 201 New York NY 10017 132912529 501(c)(3) 20000 0 Nobe Fine Art 10710 Sevenhills Drive TUJUNGA CA 91042 10664 0 Research America 1101 King Street Alexandria VA 22314 521609875 501(c)(3) 5500 0 4 1 Awards and Scholarships 100 52900 false false false false false false false false false false Julia Jenkins Secretary & E.D 147000 5426 152426 Form 990, Part III, Line 4d: Other Program Services Description OTHER PROGRAM SERVICES 4: Everylife Foundation (continued from Form 990 Page 2)Administration (FDA), and National Institutes of Health (NIH) to improve the clinical development process through our CureTheProcess Campaign, Rare Disease Workshop Series, and legislation.The Foundation was the driving force behind the grassroots movement that ensured the ULTRA/FAST language, to improve access to the FDAs Accelerated Approval pathway for rare diseases, was included into the FDASIA final bill, which was signed by the President in July of 2012. The Foundation is working with rare disease stakeholders, Congress and the FDA to ensure the timely implementation of the legislation.While the Foundation remains mainly focused on regulatory issues, it also works to grow the rare disease community by spearheading programs that fulfill unmet need for patients and by supporting other organizations working to help empower the rare disease community. Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et Jenny Soriano, M.D., a member of the Board of Directors, is the wife of Emil D. Kakkis, M.D., President and Founder of the organization. Form 990, Part VI, Line 11b: Form 990 Review Process FORM 990 IS PREPARED BY AN OUTSIDE TAX PROFESSIONAL. THE FORM IS THEN REVIEWED BYTHE ORGANIZATION'S MANAGEMENT, A MEMBER OF THE BOARD OF DIRECTORS, AND THE EXECUTIVEDIRECTOR. THIS GROUP OF INDIVIDUALS THEN DISCUSSES THE CONTENTS OF THE RETURN WITHTHE OUTSIDE TAX PROFESSIONAL. AFTER A FULL REVIEW (WITH MODIFICATIONS WHERENECESSARY), 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 E-FILED WITH THE INTERNAL REVENUE SERVICE. Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts MEMBERS OF THE BOARD OF DIRECTORS REVIEW ALL POTENTIAL CONFLICTS OF INTEREST ATLEAST ANNUALLY. ALL PERSONNEL AND BOARD MEMBERS ARE REQUIRED TO DISCLOSE (INWRITING) POTENTIAL CONFLICTS AND ANY RELATED PARTY AFFILIATIONS. LOANS BETWEEN THEORGANIZATION AND MEMBERS OF MANAGEMENT AND THE BOARD ARE STRICTLY PROHIBITED. THEORGANIZATION SEEKS FULL TRANSPARENCY ON ALL RELATIONSHIPS. 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, Line 15a: Compensation Review & Approval Process - CEO, Top Management 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. Form 990, Part VI, Line 15b: Compensation Review and Approval Process for Officers and Key Employees 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, Line 19: Other Organization Documents Publicly Available ALL OF THE ORGANIZATION'S GOVERNING DOCUMENTS, FINANCIAL STATEMENTS AND OTHER LEGALFILINGS ARE MAINTAINED IN A SECURE ENVIRONMENT AND HELD AVAILABLE FOR INSPECTION BYTAX AUTHORITIES AND THE GENERAL PUBLIC. TAX RETURNS ARE POSTED ANNUALLY TOWWW.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.