Civic Intelligence

Everylife Foundation for Rare Diseases

EIN 26-4614274 • 501(c)3 • Washington, DC

Profile

Information regarding the foundation's programs can be obtained at www.everylifefoundation.org.

1012 14th Street NW 500Washington, DC 20005

www.everylifefoundation.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

69th percentile

0.32x

Higher debt load relative to assets than 69% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Liabilities / Revenue

64th percentile

0.29x

Higher debt load relative to revenue than 64% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Net Margin

46th percentile

2.7%

Higher net margin than 46% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Top Officer Pay

86th percentile

$279,667

Higher top officer pay than 86% of similar nonprofits.

Top officer pay equals 4.0% of source-year revenue.

501(c)3 • $5M-$10M nonprofits • Source year 2024

Asset Growth

59th percentile

7.1%

Faster asset growth than 59% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Revenue Growth

43rd percentile

3.5%

Faster revenue growth than 43% of similar nonprofits.

501(c)3 • $5M-$10M nonprofits • Annualized from 2023 to 2024

Assets

Up

$6,217,588

Up $410,726 (+7.1%) from 2023

Liabilities

Up

$2,009,473

Up $201,658 (+11%) from 2023

Net Assets

Up

$4,208,115

Up $209,068 (+5.2%) from 2023

Revenue

Up

$7,031,574

Up $236,930 (+3.5%) from 2023

Expenses

Up

$6,841,685

Up $784,570 (+13%) from 2023

Net Income

Down

$189,889

Down $547,640 (-74%) from 2023

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$8.0M$6.0M$4.0M$2.0M$0Assets 2010: $167,604Liabilities 2010: $0Net Assets 2010: $167,6042010Assets 2011: $213,321Liabilities 2011: $0Net Assets 2011: $213,3212011Assets 2014: $436,978Liabilities 2014: $59,429Net Assets 2014: $377,5492014Assets 2015: $516,371Liabilities 2015: $50,898Net Assets 2015: $465,4732015Assets 2016: $651,805Liabilities 2016: $171,140Net Assets 2016: $480,6652016Assets 2020: $4,267,657Liabilities 2020: $1,261,967Net Assets 2020: $3,005,6902020Assets 2021: $4,550,600Liabilities 2021: $1,161,900Net Assets 2021: $3,388,7002021Assets 2022: $4,495,405Liabilities 2022: $1,254,443Net Assets 2022: $3,240,9622022Assets 2023: $5,806,862Liabilities 2023: $1,807,815Net Assets 2023: $3,999,0472023Assets 2024: $6,217,588Liabilities 2024: $2,009,473Net Assets 2024: $4,208,1152024

Highlighted filing

2024

Assets$6,217,588
Liabilities$2,009,473
Net Assets$4,208,115

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$8.0M$6.0M$4.0M$2.0M$0-$2.0MExpenses 2010: $927,1742010Expenses 2011: $711,6542011Revenue 2014: $1,351,627Expenses 2014: $1,214,362Net Income 2014: $137,2652014Revenue 2015: $1,787,563Expenses 2015: $1,699,639Net Income 2015: $87,9242015Revenue 2016: $2,222,355Expenses 2016: $2,207,163Net Income 2016: $15,1922016Revenue 2020: $4,425,797Expenses 2020: $4,005,266Net Income 2020: $420,5312020Revenue 2021: $5,479,237Expenses 2021: $5,088,034Net Income 2021: $391,2032021Revenue 2022: $5,789,261Expenses 2022: $5,792,631Net Income 2022: -$3,3702022Revenue 2023: $6,794,644Expenses 2023: $6,057,115Net Income 2023: $737,5292023Revenue 2024: $7,031,574Expenses 2024: $6,841,685Net Income 2024: $189,8892024

Highlighted filing

2024

Revenue$7,031,574
Expenses$6,841,685
Net Income$189,889

Filings

Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Jul 23, 2025
Return Version
2024v5.2
Gross Receipts
$7,031,574
Mission and Program Overview

Mission

Information regarding the foundation's programs can be obtained at www.everylifefoundation.org.

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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,196,875$4,036,902▲ $2,840,027
Pledges and Grants Receivable$525,050$509,648▼ $15,402
Cash and Non-Interest-Bearing Accounts$2,783,412$490,278▼ $2,293,134
Prepaid Expenses and Deferred Charges$149,331$239,752▲ $90,421
Land, Buildings, and Equipment, Net$9,857$11,877▲ $2,020
Accounts Receivable$387$7,660▲ $7,273
Savings and Temporary Cash Investments-$0-
Other Notes and Loans Receivable, Net-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Total Assets$5,806,862$6,217,588▲ $410,726
Other Assets Total$1,141,950$921,471▼ $220,479
Liabilities
Other Liabilities$1,127,290$922,359▼ $204,931
Deferred Revenue$338,000$542,250▲ $204,250
Accounts Payable and Accrued Expenses$334,850$535,389▲ $200,539
Mortgage Notes Payable Secured by Investment Property$7,675$9,475▲ $1,800
Total Liabilities$1,807,815$2,009,473▲ $201,658
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$2,320,714$2,799,782▲ $479,068
Net Assets With Donor Restrictions$1,678,333$1,408,333▼ $270,000
Total Net Assets Fund Balance$3,999,047$4,208,115▲ $209,068
Total Liabilities and Net Assets / Fund Balance$5,806,862$6,217,588▲ $410,726

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$11,412$24,926$36,338
Leasehold Improvements$465$17,581$18,046
Other Assets Org$908,108--
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Anne KennedyPolicy & AdvocacyFT$259,793$19,874$279,667
Michael PearlmutterCEOFT$201,335$8,960$210,295
Megan PinegarCOOFT$192,408$12,475$204,883
Jamie SullivanSr. Director of PolicyFT$151,230$13,160$164,390
Edward BrasfieldSr Director of DevelopFT$132,484$9,192$141,676
Shannon Von FeldenSr Director of AdvFT$127,440$14,160$141,600

Highest Paid Contractors

ContractorServicesLocationCompensation
Zuckerman Gravely ManagementRent2 Wisconsin Circle Suite 1050, Chevy Chase, MD 20815$241,088
Faegre Drinker Biddle & ReathConsulting and LobbyingPO Box 856522, Minneapolis, MN 55485$154,485
Revenue and Support

Revenue Composition

Contributions and Grants
$4,869,118
Program Service Revenue
$1,917,750
Investment Income
$129,792
Other Revenue
$114,914
All Other Contributions
$4,869,118
Change in Net Assets
$189,889

Audited Revenue Reconciliation

Revenue per Audited Statements
$7,022,629
Revenue Not Reported on Financial Statements
$8,945
Revenue Not Reported on Form 990
$19,179
Total Revenue per Audited Statements
$7,041,808
Total Revenue per Form 990
$7,031,574
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Salaries, Compensation, and Employee Benefits$3,338,258
Other Expenses$2,881,427
Grants and Similar Amounts Paid$622,000
Total Fundraising Expense$519,051
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Other Salaries and Wages$1,042,920$984,259$311,565$2,338,744
Fees for Services Other$760,423$49,531$15,068$825,022
Grants to Domestic Orgs$615,000--$615,000
Travel$507,653$30,011$29,728$567,392
Conferences and Meetings$465,610-$6,690$472,300
Other Employee Benefits$318,744$98,808$34,327$451,879
Information Technology$260,040$11,798$24,331$296,169
Occupancy$180,172$58,755$21,414$260,341
Current Officers, Directors, Trustees, and Key Employees$107,543$77,774$24,978$210,295
Payroll Taxes$138,568$42,955$14,922$196,445
Fees for Services Lobbying$176,944--$176,944
Pension Plan Contributions$99,384$30,808$10,703$140,895
Fees for Services Accounting$17,257$43,173$4,085$64,515
Office Expenses$26,922$8,353$3,028$38,303
Fees for Service Investment Mgmnt Fees-$8,945-$8,945
Insurance$4,517$2,919$1,069$8,505
Fees for Services Legal$1,881$4,706$445$7,032
Grants to Domestic Individuals$7,000--$7,000
Depreciation Depletion$3,190$2,155$755$6,100
Advertising$6,096--$6,096
Other Expenses$2,757$7,104$2,282$2,757
All Other Expenses$975$1,512$231$2,718
Total Functional Expenses$4,819,643$1,502,991$519,051$6,841,685

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Form 990$6,841,685
Expenses per Audited Statements$6,832,740
Total Expenses per Audited Statements$6,832,740
Expenses Not Reported on Financial Statements$8,945
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Scholarship AmericaMinneapolis, MN501(c)(3)scholarships$615,000
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Lease Liabilities - Operating$922,359
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
No
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

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.

Filing and Contact Details

Filer

Filer Name
Everylife Foundation for Rare Diseases
EIN
26-4614274
Phone
2026977273
Address
1012 14TH STREET NW 500, WASHINGTON, DC 20005

Signing Officer

Name
Michael Pearlmutter
Title
CEO
Signed
2025-07-23
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Michael Pearlmutter
Formed
2009
Legal Domicile
Md
Voting Board Members
9
Independent Board Members
9
Employees
31
Volunteers
15

Preparer

Firm
C E a Scholtes and Associates
Address
106 TUNBRIDGE ROAD, BALTIMORE, MD 21212
Preparer
Chris Scholtes CPA
Phone
4103230010
Supplemental Narrative

Financial Statement Notes

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.

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IRS990/Form990PartVIISectionAGrp/PersonNm0Anne Kennedy
IRS990/Form990PartVIISectionAGrp/PersonNm1Michael Pearlmutter
IRS990/Form990PartVIISectionAGrp/PersonNm2Megan Pinegar
IRS990/Form990PartVIISectionAGrp/PersonNm3Jamie Sullivan
IRS990/Form990PartVIISectionAGrp/PersonNm4Edward Brasfield
IRS990/Form990PartVIISectionAGrp/PersonNm5Shannon Von Felden
IRS990/Form990PartVIISectionAGrp/PersonNm6Vicky Seyfert-Margolis
IRS990/Form990PartVIISectionAGrp/PersonNm7Frank Sasinowski
IRS990/Form990PartVIISectionAGrp/PersonNm8Stephen Groft
IRS990/Form990PartVIISectionAGrp/PersonNm9Jennifer Bernstein
IRS990/Form990PartVIISectionAGrp/PersonNm10Amrit Ray - until 224
IRS990/Form990PartVIISectionAGrp/PersonNm11Ritu Baral
IRS990/Form990PartVIISectionAGrp/PersonNm12Shandra Trantham
IRS990/Form990PartVIISectionAGrp/PersonNm13Abbey Hauser
IRS990/Form990PartVIISectionAGrp/PersonNm14Lisa Carlton
IRS990/Form990PartVIISectionAGrp/PersonNm15Cristina Casanova Might - until 122
IRS990/Form990PartVIISectionAGrp/PersonNm16Merrill Friedman
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IRS990/Form990PartVIISectionAGrp/TitleTxt2COO
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IRS990/Form990PartVIISectionAGrp/TitleTxt4Sr Dir of Develop
IRS990/Form990PartVIISectionAGrp/TitleTxt5Sr Director of Adv
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IRS990/Form990PartVIISectionAGrp/TitleTxt7Vice Chair
IRS990/Form990PartVIISectionAGrp/TitleTxt8Treasurer
IRS990/Form990PartVIISectionAGrp/TitleTxt9Secretary
IRS990/Form990PartVIISectionAGrp/TitleTxt10Director
IRS990/Form990PartVIISectionAGrp/TitleTxt11Director
IRS990/Form990PartVIISectionAGrp/TitleTxt12Director
IRS990/Form990PartVIISectionAGrp/TitleTxt13Director
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