Headshot of Carla Lewis

Carla Lewis, CEO & Founder

Kids Conquering Sickle Cell Disease Foundation, Inc.

When Carla’s son was diagnosed with sickle cell disease (SCD) in 2001, she did what any other parent would – she sought resources to better arm herself with information on SCD. Unfortunately, her research came up short and she quickly realized there were limited information and resources available to support children with SCD and their families. Instead of getting frustrated, this situation only sparked motivation in Carla; she saw it as an opportunity to bridge a gap by bringing resources to children with SCD and their families, while simultaneously creating a community that she needed and knew others equally longed for.

Carla’s vision became a reality. Today, Kids Conquering Sickle Cell Disease Foundation, Inc., a 501c 3 non-profit organization, provides awareness, education and services to children, families and the community. Their mission is to impact lives, empower families and give hope to people impacted by SCD and other life-threatening blood disorders.

Headshot of Derek Robertson

Derek Robertson, President

The Maryland Sickle Cell Disease Association

Derek and his wife founded the volunteer-based The Maryland Sickle Cell Disease Association following their son’s diagnosis with sickle cell disease (SCD). Interestingly, Derek had a background in hemophilia and was eager to educate nurses and teachers in local hospitals.

Today, the organization focuses on awareness building in advocacy by focusing on local legislative advocacy (for example improving state’s involvement and funding for SCD), development of a K-12 SCD management program, partnerships with industry and clinical transportation. While the COVID-19 pandemic has proved challenging for the organization, they are focused on their commitment to advocating for comprehensive care for the community.

Headshot of Marcia Taylor

Marcia Taylor, Executive Director

The Sickle Cell Anemia Foundation, Oregon

In Oregon Clark County and Vancouver, there is a large need for sickle cell disease (SCD) care, education and awareness, not only for care but for the socioeconomic impact on the community – that is where The Sickle Cell Anemia Foundation of Oregon steps in. The organization digs in on educating those impacted with SCD, for example on clinical trial participation, and providing further education to the nurses, doctors and caregivers that serve the community while advocating for a broader understanding of the pain experienced by individuals living with SCD.

Headshot of Kathy Moore Norcott

Kathy Moore Norcott, Executive Director

Piedmont Health Services and Sickle Cell Agency (PHSSCA)

Focused on providing outreach, education, screening and case management for individuals with high-risk health problems, PHSSCA provides comprehensive sickle cell disease (SCD) services to North Carolina communities. To support the community through the COVID-19 pandemic, PHSSCA aims to provide “computer stations” in three rural areas to ease the burden of individuals needing assistance with their virtual appointments with medical providers. The goal is to mitigate the lengthy travel that many individuals experience to visit SCD hematologists or other specialists.