Proudly Serving the Families of Oklahoma

Our Legacy of Purpose

For more than a decade, SFSCD has stood as a beacon of hope in Oklahoma. Proudly serving
the families of Oklahoma and beyond. As the state’s only comprehensive, community-based
organization solely dedicated to sickle cell disease, we’ve woven a trusted network connecting
patients, caregivers, healthcare providers and advocates. This network delivers not just services
but a community rooted in resilience, dignity and empowerment.

A Broader Context: Why This Work Matters

The story of sickle cell disease (SCD) is one of both medical discovery and systemic challenges.
First formally described in 1910, SCD was named the first molecular disease in 1949, when
scientists identified the mutated hemoglobin at its root.
Yet despite the science, patients and families, especially within communities historically under-
resourced and underprepared faced social stigma, healthcare inequities, fragmented care, and
insufficient community support.

Beginning in the 1970s, the U.S. government and community-based organizations (CBOs)
stepped in. The Sickle Cell Disease Association of America (SCDAA) was founded in 1971 to
galvanize national awareness and coordinated action.
Community‐based organizations, like ours became essential edging forward education,
advocacy, wrap-around services and local empowerment when the mainstream system often fell
short.

In this broader landscape, SFSCD’s presence in Oklahoma is both timely and vital.

Our Impact in Action

Since inception, SFSCD has deployed a multi-pronged approach:

• Patient-Family Advocacy Support. Each year we serve hundreds of families through
  our Family Support Program providing emergency assistance, transportation, navigation,
  and advocacy to help families manage the realities of living with a chronic condition like
  SCD.
• Education & Awareness. Our campaigns reach thousands annually, breaking down
  myths about SCD, promoting early diagnosis, supporting treatment adherence and
  shining a light on the resilience of our community.
• Community Health Innovation. We are investing in technology and data-driven
  education; our upcoming AI Health Navigator Training will equip patients and caregivers
  with AI-based tools to track symptoms, access resources and make informed health-care
  decisions.
• Measurable Outcomes. Our efforts translate into outcomes: reduced hospital
  readmissions, improved treatment adherence, stronger connections between patients and
  health-care teams, all contributing to higher quality of life.

Why It’s More Than Numbers

We believe the true measure of impact isn’t just in metrics, though they matter. It’s in the stories
of families discovering strength and community, of empowered caregivers navigating their
child’s care with confidence, of patients feeling seen and supported rather than isolated by their
diagnosis.
Our core value: No one should face sickle cell disease and its inherited disorders and traits
alone. Every family we serve, every barrier we help remove, brings us one step closer to a
healthier, more empowered sickle cell community.

Looking Ahead
As the scientific horizon for SCD advances, new therapies, gene editing, broader newborn
screening and care models the role of patient advocacy organizations and community based
organization remains indispensable

We will continue to build on our legacy: deepening our programs, increasing our reach,
strengthening our infrastructure and aligning with partners and systems that elevate our mission.