EVERYLIFE FOUNDATION FOR RARE DISE… - Form 990 Financial Data

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Financial Vulnerability Assessment (Tuckman-Chang)

4 risk indicators measuring financial stability and operational resilience

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Financial Trends

Organization Details

Formation Year

2009

Legal Domicile

Principal Officer

Michael Pearlmutter

Phone

2026977273

Tax Period

2024-01-01 to 2024-12-31

EVERYLIFE FOUNDATION FOR RARE DISEASES, founded in 2009, is a community nonprofit in the Diseases & Disorders sector that reported $7.0M in total revenue in fiscal year 2024.

Mission

INFORMATION REGARDING THE FOUNDATION'S PROGRAMS CAN BE OBTAINED AT WWW.EVERYLIFEFOUNDATION.ORG.

Program Service Accomplishments

Program 1

Expenses: $2,217,036 Revenue: $1,917,750

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.

Program 2

Expenses: $1,735,071

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...

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.

Program 3

Expenses: $867,536 Revenue: $11,354

Patient programs and opportunities for patient engagement and community including an artist contest, collaborative workspace, and communications tools.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $4,869,118

Program Service Revenue $1,917,750

Investment Income $129,792

Other Revenue $114,914

TOTAL REVENUE $7,031,574

Expense Breakdown

Grants Paid $622,000

Salaries & Benefits $3,338,258

Fundraising Expenses $519,051

Program Expenses $4,819,643

Other Expenses $2,881,427

TOTAL EXPENSES $6,841,685

Year-over-Year Comparison

	2024	2023	Change
Revenue	$7,031,574	$6,794,644	+0.0%
Expenses	$6,841,685	$6,057,115	+0.1%
Net Income	$189,889	$737,529	-0.7%

Key Indicators

✓ Grants to Organizations ✓ Grants to Individuals ✓ Lobbying ✗ Political Activity ✗ Foreign Activities ✗ Donor Advised Fund ✓ Schedule B Required

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Financial Health Indicators

Comprehensive financial analysis: Altman Z-Score, liquidity, solvency, sustainability, efficiency, and growth metrics

Financial Distress Indicator

Liquidity & Cash Position

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Altman Z-Score • Liquidity Ratios • Solvency Analysis • Growth Indicators • Efficiency Metrics

Governance

Voting Members

Independent Members

Employees

Volunteers

Governance Policies

✗ Conflict of Interest Policy

✗ Whistleblower Policy

✗ Document Retention Policy

Special Practices & Reported Activities

✗ Operated a School

✗ Operated a Hospital

✗ Provided First Class Travel

✗ Reported Conflict of Interest

✗ Reported Asset Diversion

✗ Excess Benefit Transaction

✗ Made Political Expenditures

✓ Engaged in Lobbying

✗ Operated Donor Advised Fund

✗ Maintained Art Collections

✗ Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers

$210,295

Total Directors

Key Employees

Highest Compensated

reported

Name	Title	Hours/Week	Role	Reportable Comp	Other Comp	Total
Anne Kennedy	Policy & Advocacy	40.00		$259,793	$19,874	$279,667
Michael Pearlmutter	CEO	40.00	Officer	$201,335	$8,960	$210,295
Megan Pinegar	COO	40.00		$192,408	$12,475	$204,883
Jamie Sullivan	Sr. Dir of Policy	40.00		$151,230	$13,160	$164,390
Edward Brasfield	Sr Dir of Develop	40.00		$132,484	$9,192	$141,676
Shannon Von Felden	Sr Director of Adv	40.00		$127,440	$14,160	$141,600
Vicky Seyfert-Margolis	Chair	2.00	Officer Director	$0	$0	$0
Frank Sasinowski	Vice Chair	2.00	Officer Director	$0	$0	$0
Stephen Groft	Treasurer	2.00	Officer Director	$0	$0	$0
Jennifer Bernstein	Secretary	2.00	Officer Director	$0	$0	$0
Amrit Ray - until 224	Director	2.00	Director	$0	$0	$0
Ritu Baral	Director	2.00	Director	$0	$0	$0
Shandra Trantham	Director	2.00	Director	$0	$0	$0
Abbey Hauser	Director	2.00	Director	$0	$0	$0
Lisa Carlton	Director	2.00	Director	$0	$0	$0
Cristina Casanova Might - until 122	Director	2.00	Director	$0	$0	$0
Merrill Friedman	Director	2.00	Director	$0	$0	$0

Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year	Revenue	Expenses	Assets	Net Income
2024	$7,031,574	$6,841,685	$6,217,588	$189,889
2023	$6,794,644	$6,057,115	$5,806,862	$737,529
2022	$5,789,261	$5,792,631	$4,495,405	$-3,370
2021	$5,479,237	$5,088,034	$4,550,600	$391,203
2020	$4,425,797	$4,005,266	$4,267,657	$420,531

EVERYLIFE FOUNDATION FOR RARE DISEASES