Sick Cells

Nonprofit profile at a glance

EIN
813481633
IRS 990 coverage
2020–2025
Forms available
Form 990 2025, Form 990-N 2018
Location
Wheaton, IL, USA
Phone
6302346286
Rating
71
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Alliance/Advocacy Organizations

Official website

Reported finances

Revenue
$1,065,911
Expenses
$1,301,506
Assets
$569,090
Liabilities
$289,090

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

8 people listed

Highest reported compensation

  • ASHLEY VALENTINE (BOARD CHAIR): $169,361 total reported compensation
  • ABRINA TAINTER (DIRECTOR OF OPERATIONS): $89,226 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Sick cells is a national advocacy nonprofit for sickle cell disease (scd). Originally a documentary project started in 2008, sick cells grew to much more and was founded as a 501c3 nonprofit in 2017. Sick cells' mission is to elevate the voices of the scd community and our stories of resilience. In highlighting the grave disparities our community faces, we will influence decision-makers and propel change.

What it reported doing in 2025

In 2025, our organization conducted a wide range of education and outreach activities aimed at increasing awareness and understanding of sickle cell disease (scd), while also working to improve access to care for individuals living with the condition. We hosted two national events-the 2025 scd policy forum and the 2025 sick cells therapeutics conference-which engaged over 484 participants, including patients, caregivers, researchers, medicaid directors, healthcare providers, commercial payers, and other key stakeholders.our programs advanced our mission to improve quality of life for people with scd through public policy advocacy, community education, and public awareness. Highlights include: ambassador program - the sick cells ambassador program equips a diverse network of advocates with the tools and opportunities to represent and advance the scd community's interests. In 2025, we recruited 114 new ambassadors, growing the program to 432 individuals across 34 states and Washington, dc. Program activities included 11 monthly advocacy workshops (priority topic meetings), and referrals to focus groups, research projects/surveys, and speaking engagements. Additionally, ambassadors were referred to over 100 conferences and events. The program also serves as a resource hub for other scd organizations and advocates.faces of scd storytelling program - this keystone initiative captures the stories of patients and caregivers and serves as an educational resource for the scd community and beyond. Sick cells seeks to tell the untold stories within the community as well as expand awareness of the diversity of the scd patient population to better represent the community as a whole. In 2025, stories shared through our website and social media generated over 250,000 impressions and 8,000 engagements, expanding understanding of the diversity and lived experiences within the scd community.sickle cell medicaid education initiative - following the approval of two cell and gene therapies (cgt) for scd in december 2023, sick cells launched an outreach campaign to medicaid departments in all 50 states and dc. The initiative aimed to educate policymakers on cgt care models and promote equitable access for medicaid enrollees. We provided tailored information to medicaid directors, including data on local scd prevalence, community-based organizations, and state formulary policies. This information provides crucial insights into the current state of scd coverage for medicaid beneficiaries.

Operating model

Revenue model
Earned-program. 87% of the money available for current operations came from fees and other program revenue.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 76
  • Transparency & Controls: 65
  • Accountability: 76
  • Sustainability: 13
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 90.6%; rating input score 91
  • Program expense ratio: 74.2%; rating input score 74
  • Fundraising efficiency: $2.67 raised per $1 spent on fundraising; rating input score 7; 7th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 0 of 6 controls in place; rating input score 0
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Missing
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 85.7%; rating input score 86; 23rd percentile among comparable filings
  • Governance controls: 5 of 8 controls in place; rating input score 62
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Fail
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -22.1%; rating input score 6; 6th percentile among comparable filings
  • Total-asset coverage ratio: 0.44; rating input score 22; 22nd percentile among comparable filings
  • Liabilities to assets ratio: 0.51; rating input score 12; 12th percentile among comparable filings
  • Officer compensation ratio: 19.9%; rating input score 16; 16th percentile among comparable filings

Growth

  • Program expense growth: 37.3% per year; rating input score 100; 91st percentile among comparable filings
  • Revenue growth: 16.1% per year; rating input score 100; 76th percentile among comparable filings
  • Asset growth: 19.8% per year; rating input score 100; 78th percentile among comparable filings

Details

  • Where the money goes: 90.6% of revenue deployed · 74.2% of spending went to programs
  • Governance: 6 of 7 board members independent · 5 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $966K in reported program spending
  • Leadership: top reported pay $169K · 8 people listed · 0 of 6 pay-setting controls reported
  • Consistency: 30 of 30 current checks pass
  • Schedules: 5 filed schedules · includes major donors and executive pay
  • Filing history: 6 filing years from 2020 to 2025
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Pay-setting controls scored 0/100.
  • High — Financial Efficiency: Fundraising efficiency scored 7/100.
  • Review — Accountability: Governance controls: 3 of 8 not reported.
  • High — Sustainability: Operating margin scored 6/100.
  • High — Sustainability: Total-asset coverage ratio scored 22/100.
  • High — Sustainability: Liabilities to assets ratio scored 12/100.
  • High — Sustainability: Officer compensation ratio scored 16/100.