A New Chapter for Sickle Cell Care in Central PA

Dwayne Golden
May 30
7 min read

SCPASCC's Executive Director advocating during a community event. — South Central PA Sickle Cell Council executive director, Ms. Carla Johnson at a community event, promoting screening and awareness for sickle cell disease.

For years, the South Central PA Sickle Cell Council (SCPASCC) has been a steady and trusted voice for families living with Sickle Cell Disease in Central Pennsylvania. Through patient services, education, advocacy, and access to care, the Council has helped bridge the gap for individuals whose needs are too often overlooked. But since the onset of COVID-19, the organization has had to navigate some of the toughest challenges in its history, including the loss of its contract with the Commonwealth of Pennsylvania.

The pandemic disrupted more than just programs. It upended funding models and left many nonprofit organizations scrambling to keep the lights on. For SCPASCC, the loss of state-level support could have spelled the end. But thanks to a coalition of community allies and committed partners, the Council not only survived, it stayed active, responsive, and rooted in the lives of those it serves.

One organization stands out in this story, the Children’s Sickle Cell Foundation, based in Pittsburgh, PA. Over the past five years, this foundation has been a key reason the Council remained operational. Their consistent support helped maintain essential services, fund part-time staff, and ensure families continued receiving care coordination and outreach. In many ways, they carried the torch during the Council’s most vulnerable season.

And they weren’t alone.

Generous backing from Highmark Blue Shield, Capital Blue Cross, The Highmark Foundation, CVS Specialty, Waterday Foundation, UPMC, Pfizer, Novartis, Vertex, Giant Foods, the Department of Health of PA, and the Pennsylvania Legislative Black Caucus added strength and stability. These contributors provided not only financial support but a vote of confidence in the Council’s work. They kept hope alive, and programs running, while the Council reorganized, restructured, and prepared for a brighter future.

That future begins now. With the appointment of Ms. Carla Johnson as Executive Director, SCPASCC is entering a new era. It’s a moment that reflects not just a change in leadership, but a return to long-term vision, strategy, and the potential for expanded impact across the region.

Why Leadership Matters

For nonprofit organizations, leadership isn’t just about management, it’s about momentum. An Executive Director helps turn mission into movement. They align programs with purpose, guide long-term vision, secure essential funding, and serve as the face of the organization in partnerships and public forums. When that role is missing, everything slows down. Even the most passionate teams can find themselves working in survival mode, sustaining what's essential but unable to build toward what's possible.

That was the reality for the South Central PA Sickle Cell Council after the departure of former Executive Director Ms. Debra Bizzard. Her leadership had provided structure and continuity. In her absence, staff and volunteers gave their all, pouring energy into keeping services alive. But they were doing so without a central guide to help prioritize, plan, or push forward. Visionary ideas had to be shelved. Strategic goals were postponed. Everyday decisions became heavier without someone positioned to steer.

Key funder relationships became harder to maintain. Communications with healthcare systems, potential donors, and state agencies often lacked the consistency needed to grow trust. Outreach strategies, while well-meaning, were reactive instead of proactive. The result was an organization that kept its heart but couldn’t stretch its reach.

Now, with the appointment of Ms. Carla Johnson as Executive Director, the Council is no longer just preserving what’s left. It’s preparing to build again. Her arrival brings accountability, direction, and the freedom for the staff to stop putting out fires and start lighting new ones. It allows SCPASCC to step out of maintenance mode and into a new era of purpose-driven momentum—ready to serve with structure, boldness, and a long view.

Ms. Johnson Steps In

Ms. Carla Johnson officially became the Executive Director of SCPASCC in early 2025. A Lincoln University graduate with a background in nonprofit and community work, she has built a reputation in Central PA for her integrity, her responsiveness, and her ability to bring people together. She joins the Council not just to continue its work, but to reignite its mission with fresh focus.

Ms. Johnson understands what’s at stake. She’s committed to reconnecting the Council with underserved families, strengthening its volunteer network, and helping build new bridges with schools, healthcare providers, and civic organizations. She believes that every person with Sickle Cell Disease should feel seen, heard, and supported—and she’s prepared to lead the charge to make that happen.

While her background adds value, Ms. Johnson’s appointment isn’t about one person. It’s about restoring the Council’s full capacity to serve Central PA families. It’s about making sure no one faces this disease alone.

A Regional Resource With Renewed Momentum

SCPASCC has always played a special role in the region. It’s more than a service provider, it’s a lifeline. Through community education, family support, and one-on-one outreach, the Council fills critical gaps in care that larger institutions often overlook. It does so with a personal touch that only local organizations can provide.

With Ms. Johnson at the helm and a renewed sense of purpose, the Council is now positioned to expand its impact. Early plans include strengthening ties with local hospitals, relaunching caregiver support programs, and building a more robust volunteer system that reflects the diversity of the communities served.

This momentum wouldn’t have been possible without the organizations and individuals who kept the Council alive during its leanest years. Ms. Johnson’s leadership is built on their foundation. Her role was made possible by their generosity, patience, and belief in the Council’s mission.

The Power of Partnership

What happened over the past five years wasn’t just a financial patch, it was a powerful lesson in community resilience. The Children’s Sickle Cell Foundation provided both funding and guidance. Corporate supporters like Capital Blue Cross, CVS Specialty, and Vertex helped fund programming when public dollars disappeared. Civic leaders and community donors filled in the blanks.

These relationships will continue to be essential as the Council moves forward. Carla is already working to deepen existing partnerships and explore new ones, with a focus on sustainability and transparency. She plans to be open about how funds are used, what programs are in development, and how people can get involved.

The level of partnership from Pittsburgh to Harrisburg to local boroughs is now part of the Council’s DNA. It’s not just about who writes checks, it’s about who shows up, who speaks out, and who makes a difference.

Preparing for a New Era in Sickle Cell Care

This change in leadership also comes at a pivotal time in the broader field of Sickle Cell treatment. Medical science is pushing forward. Gene therapy is no longer a distant dream. New medications are reducing pain crises and improving quality of life. Insurance companies and healthcare systems are finally paying closer attention.

But new treatment doesn’t guarantee access. In Central Pennsylvania, especially rural or low-income areas, many families still face barriers to care. Misinformation, transportation issues, and limited provider knowledge can turn a promising treatment into an unreachable option.

That’s where SCPASCC plays a crucial role. With strong local leadership, the Council can make sure these new therapies don’t just exist, they actually reach people. Ms. Johnson’s team plans to ramp up education efforts, help families navigate insurance red tape, and bring trustworthy, culturally competent information to every corner of Central PA.

What’s Next for SCPASCC?

In the year ahead, the Council will focus on several major initiatives:

Rebuilding and expanding volunteer programs with clear roles, training, and recognition
Launching new outreach events in schools, health centers, and rural communities
Enhancing digital engagement, making it easier for families to get information online
Hosting caregiver workshops and peer support groups, both in-person and virtual
Advocating for health equity in collaboration with state and local legislators

These programs are not theoretical, they’re already underway. With renewed leadership, existing support, and a growing sense of direction, SCPASCC is preparing to become more visible, more accessible, and more impactful than ever before.

An Invitation to Central PA

This isn’t just a Council victory, it’s a community one. Ms. Carla Johnson’s appointment reflects the commitment of everyone who stood by this organization when it needed support. Now, the invitation is open, come be part of what’s next.

Whether you’ve supported the Council in the past or are learning about it today, there’s a role for you. Volunteer. Donate. Share resources. Host an event. Invite us to speak at your school, church, or workplace. Every small action adds to a growing wave of care, advocacy, and awareness.

Most importantly, help us keep the momentum going. The fight against Sickle Cell Disease is far from over, but with community by our side, the path ahead is filled with potential.

Closing Thoughts

The return of an Executive Director to the South Central PA Sickle Cell Council is more than an administrative update, it’s a turning point. It’s a reminder of what’s possible when communities come together, when donors stay engaged, and when leaders like Ms. Carla Johnson rise to the moment.

As we celebrate this new chapter, we do so with gratitude to the Children’s Sickle Cell Foundation, our corporate sponsors, community allies, and all who believed that this organization was worth saving. Because of you, we now move forward, stronger, more connected, and more committed than ever to those we serve.

Welcome to the new era of SCPASCC. Let’s walk it together.

Sources

CDC on Sickle Cell Disease: https://www.cdc.gov/ncbddd/sicklecell/index.html

CSCF https://cscfkids.org/

South Central PA Sickle Cell Council: https://www.scpascc.org

Blessed 2 Give: https://blessed2givepa.com/

Community Partnerships

Giant Foods: https://giantfoodstores.com/

Pfizer: https://www.pfizer.com/

Highmark Blue Shield: https://www.highmark.com/

Vertex: https://www.vrtx.com/home/

CVS Specialty: https://www.cvsspecialty.com/