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Sick Cells

EIN 81-3481633 · Wheaton, IL

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthWeak38 out of 100GovernanceGood85 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$1.1 million
Spending
$1.3 million
Spent on programs
74%
Reserves
2.5 months of spending
Largest source of income
fees for its services, 87%
Employees
9
Volunteers
0
Highest pay
$169,361, board chair

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Weak: 38 out of 100. Higher than 11% of charities in its peer group (health care, $1m to $10m).

  • Reserves

    10 of 35

    Spendable reserves would cover 2.5 months of spending.

  • Debt

    5 of 20

    It owes 51% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 22% of income.

  • Income trend

    15 of 15

    Income rose 60% on the year before.

  • Spending floor

    8 of 15

    74% of spending went to programs and raising each dollar of donations cost 37 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 85 out of 100. Higher than 38% of charities in its peer group (health care, $1m to $10m).

  • Independent board

    25 of 25

    6 of 7 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    0 of 8

    Reports no written whistleblower policy.

  • Record keeping policy

    0 of 7

    Reports no written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (1)
  1. $965,517 spent. 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.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since March 2017.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.