With a heart burning with passion and empathy, Andrea M. Matthews, a mother whose child battled sickle cell disease, embarked on a transformative journey in 2002. Frustrated by the lack of support programs for families affected by this debilitating disease, she reached out to others who shared her burden. Together, they formed the foundation of what would become the Children’s Sickle Cell Foundation.
Andrea envisioned a world where children with sickle cell disease and their families would have access to comprehensive support, education, advocacy, and hope for a cure. Her unwavering determination fueled the organization’s mission to bridge the gap in services and create a community where no one had to navigate this challenging journey alone.
From the initial question, “What if?”, the Children’s Sickle Cell Foundation was born, embodying a profound commitment to understanding and fulfilling the needs of families touched by sickle cell. Through family support meetings, focus groups, and surveys, the organization listened intently to the voices of those directly impacted by the disease.
CSCF stands as an organization for families, by families, ensuring that the experiences and perspectives of those living with sickle cell are always at the forefront. This unwavering commitment to advocacy and support has driven the development of innovative programs and services, empowering families to navigate the complexities of sickle cell disease with resilience and hope.
Pennsylvania Living Well with Sickle Cell® Program: Making a Lasting Impact
In Pennsylvania, we are leading the charge in supporting individuals living with sickle cell disease through the PA Living Well with Sickle Cell® Program. This comprehensive initiative spans from Southwest PA to the Lehigh Capital Area and Northeast region, ensuring that every person affected by sickle cell disease has access to quality care and resources.
Our program focuses on improving access to healthcare services, addressing social determinants of health across the lifespan, with a particular emphasis on education and employment during the critical transition from pediatric to adult healthcare. We believe that everyone living with sickle cell disease deserves the opportunity to thrive and reach their full potential.
During the challenging times of the COVID-19 pandemic, CSCF stepped forward to support over 500 households. We provided more than $25,000 in assistance to individuals for basic needs, distributed grocery store gift cards, and ensured access to personal protective equipment. Additionally, through Project REACH (Remote Engagement Addressing Critical needs at Home), our Community Health Workers offered invaluable social support through phone, text messaging, and video conferencing. We hosted high-quality support groups for parents and adults living with sickle cell disease, fostering a sense of community and empowerment.
Our unwavering goal is to ensure that families know they are not alone and that CSCF stands as a trusted resource for accurate and timely information. We strive to create a world where individuals living with sickle cell disease have the support they need to thrive and live fulfilling lives.
Michael L. Matthews for his exceptional leadership and dedication to the Children’s Sickle Cell Foundation, Inc.(CSCF). His commitment to the Educational Support Program has made a profound impact on the students. Their improved grades are a testament to his unwavering belief in their potential.
We are immensely grateful for Michael’s vision in expanding the Educational Support Program with initiatives like Back2School Bash and Saturday SMASH Sickle Cell. These programs have fostered a sense of community, and empowered children to prioritize their health and well-being.
Michael’s ability to forge partnerships with schools, hospitals, corporations, and community groups has been instrumental in CSCF’s growth and success. His leadership has enabled CSCF to become the State Lead on the Sickle Cell Disease Newborn Screening Follow-Up Program and expand its reach in Pennsylvania through the Living Well with Sickle Cell® Program.
We are incredibly thankful for Michael’s dedication to advocacy and his role as Co-Lead for the PA Supports Sickle Cell Advocacy Day. His efforts have amplified the voices of those affected by sickle cell disease and have led to meaningful policy changes.
We are honored to have Michael as our Executive Director over the last 10 years, and appreciate his continued leadership as Co-Lead for the Regional SiNERGe CBO Project ECHO and the Unaffiliated Patients Committee. His unwavering commitment to the sickle cell community inspires us all.
Thank you, Michael, for your tireless efforts and unwavering dedication. CSCF staff and board are truly fortunate to have you as their leader.
Board Chair
Vice Chair
Secretary
Treasurer