SICK CELLS

As filed

Subsection

03

NTEE code

E01

Classification

1200

Street

2100 MANCHESTER RD STE 1040

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 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.

  Expenses $965,517 · Revenue $950,359

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

• 2025

  Revenue

  $1,065,911

  Expenses

  $1,301,506

  Contributions

  $115,552

  Grants paid

  $0

• 2024

  Revenue

  $667,849

  Expenses

  $770,184

  Contributions

  $43,519

  Grants paid

  $0

• 2023

  Revenue

  $909,617

  Expenses

  $754,876

  Contributions

  $74,968

  Grants paid

  $0

• 2022

  Revenue

  $583,647

  Expenses

  $550,030

  Contributions

  $30,447

  Grants paid

  $0

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $658,234

  Expenses

  $403,398

  Assets (EOY)

  $400,193

• 2020 · 990

  Revenue

  $344,528

  Expenses

  $334,876

  Assets (EOY)

  $78,804

• 2020 · 990

  Revenue

  $344,528

  Expenses

  $268,323

  Assets (EOY)

  $145,357

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.

Form 990-N e-Postcard, tax year 2018

Tax period

1 January 2018 to 31 December 2018

Principal officer

Ashley Valentine

Mailing address

4512 River DriveLisle IL 60532

Website

www.sickcells.org

As filed, from the IRS e-Postcard file of 2 November 2026. The IRS publishes only each organization's most recent postcard, so earlier years are not shown. A 990-N carries no financial detail. The postcard also gives the principal officer's address, which is not shown here.

Grants made

No itemized grants to organizations. Schedule I is filed only by organizations that granted more than $5,000 to a recipient, so most filers have none.

Grants received

• PHARMACEUTICAL RESEARCH AND MANUFACTURERS OF AMERICA

  $15,000

  2022 · General Contribution

• BIOTECHNOLOGY INNOVATION ORGANIZATION

  $10,000

  2022 · SPONSORSHIP

• PHARMACEUTICAL RESEARCH AND MANUFACTURERS OF AMERICA FND INC

  $7,500

  2022 · VACA Challenge Award

Other IRS files