irs program accomplishments · form 990 part iii · fy2022
What they reported doing
- #1 primary $2K
- #2 $3K
named programs · 4 · from sources
What they call their work
26th Annual SCTPNWalk for Education & Awareness
Annual fundraising walk in Central Park that promotes advocacy, education, and community engagement while raising funds for SCD services.
Community Connections Virtual Support Interactive
Monthly virtual support group held on Zoom and Facebook Live that connects individuals globally to discuss SCD/thalassemia, healthcare navigation, clinical trials, and advocacy.
Public Outreach & Education Services (POES)
Provides free educational forums, training, and culturally competent resources in multiple languages to schools, healthcare institutions, and community organizations to increase awareness of sickle cell disease and thalassemia.
World Sickle Cell Day Therapeutics Conference
Annual conference held around Juneteenth to highlight the global health, social, economic, and political impacts of sickle cell disease through presentations by advocates, providers, and industry partners.
activities · 6 groups
What they do
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Bleeding and Blood Disorder Support Services 2 activities
- Direct support services for individuals and families affected by sickle cell disease and inherited blood disordersProvides non-medical care coordination, social support, referrals to healthcare resources, and advocacy interventions for individuals and families affected by sickle cell disease and thalassemia in homes, schools, workplaces, and healthcare settings. Services are delivered through community health workers and public outreach programs.
- Student support and scholarship programs for individuals with sickle cell disease or thalassemiaSupports students living with sickle cell disease or thalassemia in pursuing higher education through an annual undergraduate scholarship program.
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Public Awareness and Educational Outreach 1 activity
- Community and public education outreach on sickle cell diseaseConducts educational forums, presentations, and outreach activities in schools, places of worship, businesses, and online to increase awareness of sickle cell disease and inherited blood disorders. Provides multilingual educational materials in Arabic, French, and Spanish for high schools, colleges, healthcare professionals, and community organizations.
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Facility-Based Service Delivery 1 activity
- Expansion and operation of regional chaptersOperates a regional affiliate chapter in St. Thomas, U.S. Virgin Islands, and is developing a new chapter in Albany, New York, to extend services and outreach.
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Medical Professional Education & Training 1 activity
- Professional training and capacity building for healthcare providers and educatorsOffers training programs and professional development for healthcare providers, educators, and other professionals on managing sickle cell trait and disease. Also provides training opportunities for volunteers and members to support organizational mission delivery.
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Rare Genetic Disease Research and Advocacy 1 activity
- Public awareness and advocacy campaigns for sickle cell diseaseConducts public awareness initiatives, including advocacy for sustained funding and recognition of sickle cell disease as a global human condition. Organizes events such as the annual walk in Central Park and participates in virtual learning networks to promote education and policy change.
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Disease-Specific Clinical & Patient Education 1 activity
- Virtual and online education and support programsHosts monthly virtual support and education sessions via Zoom and Facebook, and organizes an annual multi-day virtual conference on World Sickle Cell Day to educate about the global health, social, economic, and political impacts of sickle cell disease.
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financials · form 990 · fy2024
revenue
Total revenue$483K
Contributions & grants$483K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$483K
Program expenses100%
Admin / overhead0%
Fundraising0%
Salaries & benefits$291K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$67K
Cash$62K
Investments$0
Liabilities$302
Net assets$67K
Liquid reserves1.5 mo
6 years on record · 2019–2024 · YoY revenue +84.2%
leadership · form 990 part vii · fy2024
Who runs it
board members · 2
- TERESA DAVIS — PRESIDENT
- VIVIAN OKWUAGWU — SECRETARY
relationships · 15
Who they work with
- Amina K. Sickle Cell Support Circle of Harlem Partner — Local chapter providing support services for sickle cell patients in Harlem, NY
- Belize Sickle Cell Association (BSCF) Partner — International affiliate supporting sickle cell patients in Belize, Central America
- Centers for Disease Control and Prevention Government — Advocates for restoration of the Sickle Cell Data Collection National database managed by the CDC.
- Community Health Workers (CHW) Partner — Certified community health workers deliver public outreach, educational services, and family support on behalf of SCTPN.
- Gambia Sickle Cell Association (GSCA) Partner — International affiliate providing support and advocacy in Gambia, West Africa
- Not specified Partner — Offers education and training in Spanish and English to community and institutional partners.
- Raising Hope International Friends (RHIF) Partner — International affiliate supporting sickle cell patients in Uganda, East Africa
- SCTPN St. Thoma, USVI, Chapter Partner — Regional affiliate chapter serving the U.S. Virgin Islands.
- SCTPN St. Thomas Partner — Regional chapter serving sickle cell patients in St. Thomas, U.S. Virgin Islands
- Sickle Cell Advocates of Rochester (SCAR) Partner — Affiliate organization supporting sickle cell patients in Rochester, NY
- Sickle Cell Warriors of Buffalo Partner — Chapter providing support and advocacy for sickle cell patients in Buffalo, NY
- University of New Mexico Partner — Community partner in the Project ECHO initiative
- WSCO Partner — Co-hosts the 26th Annual SCTPN Walk for Education & Awareness in Central Park.
- Westchester Sickle Cell Outreach (WSCO) Partner — Affiliate organization offering outreach and support services in Westchester, NY
- forma Therapeutics Partner — Collaborates on clinical trials education through the Lunch & Learn series.
strategies · 4
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Community-Embedded Outreach and Support Modelmethodology: community-health-worker-outreachBy embedding community health workers and support services within trusted local institutions and using a chapter-based affiliate structure, the organization improves engagement and access to care, because trusted peer and local networks increase participation and reduce systemic barriers.
- Empowerment Through Representation and Visibilitymethodology: empowerment-through-representationBy showcasing individuals with sickle cell and thalassemia living full, productive lives through advocacy, scholarships, and peer support, the organization fosters empowerment and long-term well-being, because visible role models increase self-efficacy and educational aspirations among patients.
- Inclusive Health Education through Universal Framingmethodology: inclusive_health_educationBy framing sickle cell disease as a universal human condition linked to malaria-endemic regions rather than a racially or ethnically specific illness, the organization expands public awareness and inclusivity, because this reduces stigma and increases engagement across diverse populations.
- Knowledge Democratization via Virtual Learning and Collaborationmethodology: project-echoBy using virtual platforms like Project ECHO and recurring interactive sessions, the organization improves care delivery and patient engagement, because decentralized, case-based learning enables equitable access to expertise for both providers and patients in underserved regions.