Form 990 for tax year 2023

Totals

Total revenue

$1,090,039

Total expenses

$4,095,069

Contributions and grants received

$1,088,275

Grants paid

$0

Program service revenue

$0

Investment income

$1,764

Other revenue

$0

Total assets, end of year

$2,657,838

Total liabilities, end of year

$622,374

Net assets or fund balances, end of year

$2,035,464

Program services expenses (Part IX)

$3,374,756

Management and general expenses

$720,313

Fundraising expenses

$0

Program service expenses (Part III)

$3,374,756

Program services were 82.4% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2023

• Other programs and services revenue & exenses include: Family Programs, Special Projects, Pacific Sickle Cell Regional Collaborative, Health Resources Services Administration Newborn Screening.

  Expenses $1,949,660 · Revenue $563,592

• Networking California for Sickle Cell Care (NCSCC) aims to facilitate a collaborative, integrative approach among healthcare providers, agencies, and the broader community to execute a unified, systematically developed care plan. This plan outlines precise objectives to guarantee that individuals with sickle cell disease (SCD) across California have access to comprehensive, patient-centered, well-coordinated, accessible, safe, and high-quality healthcare services, regardless of their location. The primary partnering organizations in NCSCC include the Sickle Cell Disease Foundation and the Center for Inherited Blood Disorders (CIBD), a specialized non-profit hematology center. CIBD is dedicated to providing education, support, and multidisciplinary, family-centered care for adults and children with various inherited blood disorders.

  Expenses $973,977

• Project A: Sickle Cell Trait Follow-up Program (SCTFP)in compliance with Health and Safety Code, Section 125001, and as an operational element of the California Department of Public Health (CDPH) Newborn Screening Program (NBS), the SCDFC is mandated to deliver specialized counseling services for heritable or congenital hemoglobinopathies. These services encompass, but are not restricted to, Sickle Cell Trait (SCT) and Sickle Cell Disease (SCD) for individuals within the state of California. SDCFC shall provide bilingual (Spanish and English) counseling, both telephonically and in-person, to convey hemoglobin trait carrier information to families of neonates identified by the NBS with specific hemoglobin patterns (e.g., FAS, FAC, FAD), in alignment with state-defined guidelines and protocols. Additional hemoglobin patterns may be incorporated into this program as determined necessary by state authorities. Furthermore, SDCFC will establish referral pathways for families requiring supplementary support services.Project B: Sickle Cell Counselor Training and Certification Program (SCCTCP)The SCCTCP is a critical segment of the California Genetic Disease Screening Programs strategic activities, focusing on the dissemination of information and follow-up procedures for hemoglobinopathies. Utilizing SCCTCP curriculum materials and assessments, each pre-approved by CDPH prior to administration, the Contractor shall allocate designated staff to optimize participant enrollment, execute SCCTCP Modules I, IIA, IIB, and III as outlined, biannually, within each contractual period, and perform outcome evaluations.

  Expenses $369,926 · Revenue $392,144

• California Newborn Screening Program: Since 1978, the Sickle Cell Disease Foundation (SCDF) has delivered comprehensive counseling, education, and training services statewide. SCDF offers no-cost follow-up counseling and testing for parents of newborns identified with hemoglobin traits. Additionally, SCDF provides a certification program in single-gene counseling and conducts educational courses focused on sickle cell disease, including in-depth instruction on its underlying scientific principles.

  Expenses $81,193 · Revenue $195,539

As filed on the 2023 return.

Listed in Part VII

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.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type

form_990

Tax year

2023

Filed

15 November 2024

IRS schema version

2023v5.1

Source object

202423209349301877

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