In 2002, Andrea M. Matthews, a mother of a child with sickle cell disease became exhausted in her search for support programs for her son and her family. She identified a gap in services for children with sickle cell disease from birth to adulthood in Pittsburgh. Frustrated and feeling alone, she reached out to a few other parents, community leaders and friends for help. This group would become the first official Board of what was first known as Project 2022. Andrea set the vision for impacting sickle cell disease over the next twenty years.
On September 17, 2002 the vision was birthed out of the question,”What if? What if there was an organization that specifically met the needs of children with sickle cell disease and their families? What if this organization had a heart for educating families, advocating and raising awareness in the community? What if this organization committed to raise funds for research to find a cure for sickle cell disease?”
In 2003, Project 2022 would be renamed The Children’s Sickle Cell Foundation, Inc. and in 2004, receive nonprofit status as a 501 (c)(3). Programs were developed from listening to the needs of parents and those living with sickle cell disease through Family Support meetings, focus groups, and surveys. CSCF is an organization for families by families. The family voice will always be a cornerstone for programs, services, and advocacy.
We are making the largest impact for persons living
with sickle cell disease in Pennsylvania through the PA Living Well with Sickle Cell Initiative stretching from Southwest PA through Central to the Northeast regions. This program focuses on improving access to quality care, addressing social determinants of health across the lifespan with a particular focus on education and employment during the youth transition from pediatric to adult health care.
Throughout the COVID19 Pandemic, CSCF supported more than 500 households with more than $25,000 in support for basic needs, grocery store gift cards, personal protective equipment. In addition, through Project REACH (Remote Engagement Addressing Critical needs at Home) Community Heallth Workers provided social support through phone, text messaging and video conferencing to deliver high quality support groups for parents and adults living with sickle cell disease.
Our goal is to ensure that families know where to turn when they need help and that CSCF is a trusted resource for accurate and timely information. You are not alone.