Children’s Sickle Cell Foundation

What Children’s Sickle Cell Foundation does

Children's Sickle Cell Foundation, Inc. (CSCF) is a Pittsburgh-based nonprofit 501(c)(3) founded in 2002 by Andrea M. Matthews that delivers a portfolio of free programs and resources to children and adults with sickle cell disease (SCD) and their families across three of five Pennsylvania Department of Health regions (Southwest, Northwest, Northeast). Its core service offerings include the Family Support Program, Parent Support Group, SCAT (Sickle Cell Adult Team), Educational Support Program (including the Assignment Retrieval Program that delivers schoolwork within 24-36 hours of hospitalization), Read2Lead and Math4Masters summer programs, Back2School Bash, the Young Adult Transition Program for ages 16-26, and Employment Assistance, all coordinated under the trademarked "Living Well with Sickle Cell®" umbrella. CSCF's revenue model relies entirely on donations, individual and corporate giving, fundraising events, third-party donation programs (Amazon Smile, United Way), and government grants from the Pennsylvania Department of Health (Community Based Supportive Services Program, SCD Newborn Screening Follow-Up Program) and HRSA, including passthrough funding through the Johns Hopkins-managed SiNERGe regional improvement project. The organization has no proprietary technology platform; service delivery is carried out by approximately six paid staff plus a small board (Chair Tahar Boumaza, Secretary Jessica Owens, Treasurer Etta Flanagan), distributed through hospital partnerships (UPMC, Children's Hospital of Pittsburgh, St. Christopher's Hospital), Pittsburgh Public Schools, the PA Sickle Cell Providers Network, the toll-free care line (1-855-SICKLE8), and virtual meeting formats, with documented outcome gains in school readiness (96%), absenteeism reduction (31 to 19 days/year), and GPA improvement (2.01 to 2.82) since 2006.

Name

Children’s Sickle Cell Foundation

Legal name

Children's Sickle Cell Foundation, Inc.

Website

https://cscfkids.org

Company type

Private

Founded year

2002

Operating status

Operating

Headcount range

1–10 employees

Short description

Children's Sickle Cell Foundation is a Pittsburgh-based nonprofit 501(c)(3) that delivers free educational, family, and transition support programs to children and adults with sickle cell disease across three Pennsylvania Department of Health regions.

Ownership category

akta.pro rank

Product category

Nonprofit Health Support Services

NAICS

Child and Youth Services (62411), Child and Youth Services (624110), Voluntary Health Organizations (813212)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Social Services (8300)

akta.pro primary industry

Health Education & Parent Coaching (Sleep, Safety, Illness Management) (EDACAMAN)

akta.pro secondary industry

Children’s Hospitals & Pediatric Health Systems (HLAFAJAG)

Keywords

• Sickle cell support
• Nonprofit health advocacy
• Family support services
• Educational support programs
• Community health outreach

Headquarters

HQ city

Pittsburgh

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Individual and Corporate Donations: CSCF generates revenue through financial donations from individuals and corporations via its website (PayPal), checks, and fundraising events. Donations support families with challenges caused by SCD, including basic needs, transportation, education, and wrap-around services.
2. Government Grants and Programs: CSCF receives funding from government sources including the Pennsylvania Department of Health (Community Based Supportive Services Program, Sickle Cell Disease Newborn Screening Follow-Up Program) and HRSA (Health Resources and Services Administration) through the SiNERGe project. These grants fund specific programs and operational costs.
3. Fundraising Events and Campaigns: CSCF organizes benefit galas (e.g., 20th Anniversary Gala), Serving Hope community events, Facebook birthday fundraisers, and other crowdfunding campaigns. A portion of event proceeds supports research for a universal cure.
4. Third-Party Donation Programs: CSCF participates in Amazon Smile (0.5% of qualifying purchases donated), United Way Contributor Choice Donations (code #1431932), and similar employer matching or third-party donation programs.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels12 records

Core offering

Children's Sickle Cell Foundation is a nonprofit 501(c)(3) organization that delivers a comprehensive suite of free programs and services for children and adults living with sickle cell disease (SCD) and their families across Pennsylvania. Offerings span family support groups, educational advocacy and continuity programs, transition-to-adulthood support, adult peer groups, employment assistance, and resource publications, all unified under the trademarked Living Well with Sickle Cell® program.

Product overview

Children's Sickle Cell Foundation is a nonprofit 501(c)(3) organization that provides a comprehensive suite of programs and services for families affected by sickle cell disease. The organization operates as a single unified offering centered on the Living Well with Sickle Cell® Program, which encompasses multiple integrated services including family support programs (Family Support Program, Parent Support Group, SCAT), educational support (Educational Support Program, Read2Lead, Math4Masters, Back2School Bash), the Young Adult Transition Program, Employment Assistance, and educational resources such as the New Parent Handbook and Sickle Cell Speaks initiative. These programs work together to provide holistic support across the lifespan from newborn diagnosis through adulthood.

Differentiator

Problem solved

Functional benefit

Brands

• Living Well with Sickle Cell®: A registered trademark program providing comprehensive support services including education, advocacy, and resources for families living with sickle cell disease.

Products and services

• Family Support Program

Quantifiable outcome

• 96% of children report they return to school better prepared since the Educational Support Program's inception in 2006.
• +2 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Ten partnerships are on record, tiered core and minor.

• UPMC / Children's Hospital of PittsburghcoreStrategic or Co-development PartnerCSCF partners with UPMC and Children's Hospital of Pittsburgh for direct service delivery, hospital-based referrals, and the Assignment Retrieval Program. When a child with SCD is hospitalized, the hospital social worker contacts CSCF to initiate educational support services.
• St. Christopher's HospitalcoreStrategic or Co-development PartnerCSCF partners with St. Christopher's Hospital as part of its hospital and community-based organization network, collaborating to provide comprehensive sickle cell care and support services.
• Johns Hopkins (SiNERGe Principal Investigators)coreStrategic or Co-development PartnerCSCF participates in the SiNERGe (Sickle Cell Improvement in the Northeast Region through education) project managed by Principal Investigators at Johns Hopkins, funded by HRSA. The project works with Site Principal Investigators in 13 states, DC, the U.S. Virgin Islands, and Puerto Rico to improve access to high-quality care for sickle cell patients.
• Pittsburgh Public SchoolscoreStrategic or Co-development PartnerCSCF partners with Pittsburgh Public Schools to provide educational support services for children with SCD, including attending IEP and 504 meetings with parents, and providing professional development sessions for teachers and staff.
• Brashear AssociationminorStrategic or Co-development PartnerCSCF partners with the Brashear Association, a community organization in Pittsburgh, for community outreach and neighborhood-based programming.
• Sickle Cell Disease Association of America (SCDAA)coreStrategic or Co-development PartnerCSCF is affiliated with SCDAA, participating in national awareness campaigns and network activities that connect community-based organizations working on sickle cell disease across the country.
• Crescent FoundationminorStrategic or Co-development PartnerCrescent Foundation is listed as a partner organization, collaborating with CSCF on sickle cell advocacy and community support initiatives in Pennsylvania.
• Pfizer (Together for Rare)minorStrategic or Co-development PartnerCSCF partners with Pfizer as part of the Together for Rare initiative, providing resources and tools for individuals living with sickle cell disease to connect with the sickle cell community and improve quality of life.
• SiNERGe (Sickle Cell Improvement in the Northeast Region through Education)coreStrategic or Co-development PartnerSiNERGe is a HRSA-funded regional improvement project managed by Johns Hopkins. CSCF participates as a community-based organization, connecting with other CBOs and leaders through monthly Project ECHO sessions and the national Shine The Light On Sickle Cell campaign. The project spans 13 states, DC, the U.S. Virgin Islands, and Puerto Rico.
• University of Pittsburgh School of MedicinecoreStrategic or Co-development PartnerCSCF partners with the University of Pittsburgh Medical School through the annual White Coats program, where families with lived SCD experience share their journey with first-year medical students during their Introduction to Being a Physician course.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Sickle Cell Disease Association of America (SCDAA): National umbrella organization for sickle cell disease community-based organizations; CSCF is an SCDAA affiliate and both deliver family support, education, and advocacy for SCD populations, making SCDAA the closest national counterpart and the most directly comparable peer.
• National Organization for Rare Disorders (NORD): Large national umbrella for rare-disease patient organizations, including SCD; relevant as a peer in the broader rare-disease advocacy and patient-support space where CSCF operates.

Regional players

• Sickle Cell Foundation of Georgia: Statewide SCD-focused nonprofit providing education, family support, and patient navigation in Georgia; directly comparable to CSCF's service model but operating in the Southeast rather than Pennsylvania.
• Sickle Cell Disease Foundation of California: California-based SCD community organization offering education, counseling, and family support services; parallels CSCF's family-centric program model in a different geographic market.
• Sickle Cell Association of Texas Marc Thomas Foundation: Texas-based nonprofit providing education, advocacy, and family support for SCD patients; comparable in mission, scope of services, and reliance on community health worker engagement.
• Sickle Cell Foundation of Tennessee: Tennessee-based SCD nonprofit delivering education, support groups, and patient services; comparable community-driven support model and target population to CSCF.
• Cayenne Wellness Center: California-based SCD and mental health nonprofit providing support groups, mental wellness services, and community education; overlapping mission and program mix with CSCF's family and adult support groups.

Direct peers

• Sickle Cell Community Consortium: National coalition of SCD-focused CBOs that collaborates on advocacy, education, and capacity building; CSCF participates in adjacent networks (SiNERGe, SCDAA) and shares the same patient-advocacy mission.
• Sick Cells: National SCD advocacy nonprofit focused on elevating patient voices and influencing health policy; overlaps with CSCF's advocacy and awareness work, though Sick Cells operates at a national rather than state level.

Others

• Children's Hospital of Pittsburgh (UPMC): Core hospital partner that delivers the clinical care CSCF's programs wrap around; included as a strategic ecosystem partner rather than a direct competitor, but serves the same pediatric SCD population.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/CSCFkids
• Facebookfacebook.com/cscfsicklecell
• LinkedInlinkedin.com/company/children%E2%80%99s-sickle-cell-foundation-inc
• Instagraminstagram.com/childrensicklecell
• Pinterestpinterest.com/childrensicklecell

Revenue estimate

Valuation estimate

Number of profiles

Profiles13 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

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Frequently asked questions about Children’s Sickle Cell Foundation