This is a documentary on raising the awareness of Sickle Cell Disease. It features interviews with members of the Sickle Cell Disease Association of Illinois(SCDAI), a nonprofit organization in Chicago that provides outreach programs and assistance to families with members suffering from Sickle Cell Disease. It also features members of the Keepers of the Flame, an award winning fundraising team that helps raise money for Sickle Cell Disease.

Parents often feel a range of emotions when they first find out their child has a genetic condition/disability. This video will show how they were able to move from initial feelings of frustration, fear and helplessness to moving forward to a place of action. A special thank you to the Region 4 Midwest Genetics Collaborative family representatives who agreed to be filmed and share their stories.

This video is about children living with Sickle Cell Disease. A chronic, usually fatal anemia marked by sickle-shaped red blood cells, occurring almost exclusively in Black people of Africa or of African descent, and characterized by episodic pain in the joints, fever, leg ulcers, and jaundice. The disease occurs in individuals who are homozygous for a mutant hemoglobin gene.

Susan Peters, manager of the Office of Community Affairs at the University of Chicago Medicine, hosted a program on sickle cell disease as part of the University’s Community Health Focus Hour program on WVON 1690 AM. Peters played host to University of Chicago pediatric hematologist (and clinical director of La Rabida’s sickle cell program) Radhika Peddinti, MD, Tanisha Jones, NP, and longtime La Rabida patient Jamal, 17. The panel also included Linda D. Drawhorn, RN, MS from the Sickle Cell Disease Association of Illinois (SCDAI), and discussed this complex condition, treatment options and supports available to those affected by it.

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There is no standard definition of Care Coordination. In this video, Region 4 Midwest Genetics Collaborative shares their definition and demonstrates that parents play an important role in coordinating care for their child. Key concepts of care coordination are shared along with examples of why they are important. www.region4genetics.org

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