The Sickle Cycle Podcast

This episode features an honest conversation between mother and daughter. Dr. Jackie Flemmings is an educator and has received her PhD in Education. She has raised three beautiful children with her husband. As a mother to a daughter with sickle cell disease, she embodies the definition of an advocate and believer. Listen to this intergeneration dialogue which discusses health, motherhood, miscarriages, health, and faith.

Dr. Wanda Whitten-Shurney is a pediatrician that has spent her life advocating for the sickle cell community. In this episode, she talks of her father, Dr. Charles Whitten, sickle cell disease educator and pioneer. The legacy of her father continues today through her one of a kind educational workshops and leadership of the Sickle Cell Disease Association of American Michigan Chapter. Dr. Whitten-Shurney provides best practices for caring for a child with SCD. She refers to her patients as "snowflakes" because each patient experiences the disease differently, thus highlighting the challenges of this illness.

For more than 46 years, the Sickle Cell Disease Association of American (SCDAA)has been committed to promoting and advancing initiatives focused on people affected by sickle cell conditions worldwide. In this episode, we are joined by Beverley Francis-Gibson, President and CEO of SCDAA. Mrs. Francis-Gibson provides a rich understanding of the organization, including current programs, events, initiatives, and partnerships to support research and education for sickle cell. There are numerous ways to support SCDAA, including attending this years 49th National Annual Convention which will be held on Oct 12-16, 2021. More information about SCDAA can be found at the following link: www.sicklecelldisease.org.

Sickle Cell impacts every part of the body including the eye. Dr. Adrienne Williams Scott is Chief, retina specialist, and assistant professor of ophthalomology at Wilmer Eye Institute, Johns Hopkins. Dr. Scott treats patients across the spectrum of vitreoretinal medical and surgical diseases, including sickle cell retinopathy. Dr. Scott discusses the impacts of sickle cell disease regarding the eye, preventative measures, and her latest research. Dr. Scott is a leader in her field and her work and efforts will continue to benefit the sickle cell community and the world for many generations.

Welcome to our first episode of 2021. Mrs. Tonya Prince is the Co-founder of the Sickle Cell Association of Houston. Currently, approximately 9,005 residents are living with sickle cell disease in the state of Texas. On this episode, Mrs. Prince discusses her personal testimony with caring for her child with sickle cell anemia and her life's work of advocating for and with the sickle cell community. Mrs. Prince leadership has led to access of treatment options, legislation action for sickle cell related bills, and access to vaccine distribution during COVID-19 for sickle cell warriors in Houston, Texas.

This month, we recognize September as Sickle Cell Disease Awareness Month. Dr. Sophie Lanzkron is Director of the Sickle Cell Center for Adults at The Johns Hopkins Hospital. The sickle cell community has benefited greatly from her research, leadership, and expertise. Dr. Lanzkron research focuses on sickle cell disease, hydroxyurea, patient-centered health care, and health services research. On this episode, she discusses her journey and love for hematology, overview of hydroxyurea, and quality care for sickle cell disease patients.

The Sickle Cycle Podcast features LaTasha Lee, Senior Manager of Partnership Engagement Sickle Cell Disease Clinical Trials Network and Shauna Whisenton, Manager of Sickle Cell Disease Community Engagement from the American Society of Hematology Research Collaborative (ASH RC). ASH RC is a non-profit organization that was established in 2018 to foster collaborative partnerships to accelerate progress in hematology. The first research initiative of ASH RC is the Sickle Cell Disease Clinical Trials Network which has the goal of optimizing the conduct of clinical trials research in Sickle Cell Disease. Dr. Lee and Ms. Whisenton discuss the need for community engagement and the importance of clinical trials. Ms. Whisenton unique perspective provides a personal insight regarding participation in a clinical trial which cured her of Sickle Cell Disease (SC). The ASH RC is improving the lives of people affected by blood disorders and more information can be found at the following link: https://www.ashresearchcollaborative.org.

This month, we recognize the 10th Anniversary of World Sickle Cell Awareness Day on June 19th. The Sickle Cycle Podcast features world-renowned Dr. Kwaku Ohene-Frempong, Director Emeritus of the Comprehensive Sickle Cell Center at The Childrens Hospital of Philadelphia and President of the Sickle Cell Foundation of Ghana. Dr. Ohene-Frempong discusses the history of Sickle Cell Disease and how this illness has guided his life, personally and professionally. As a physician and father of a child who had Sickle Cell Anemia (SS), he offers recommendations for parents and patients. At the age of 73, he continues to dedicate his life to research, treatments, and access to quality care for patients, especially in Ghana. More information about Dr. Ohene-Frempong can be found at the following link: https://www.chop.edu/doctors/ohene-frempong-kwaku.

The Sickle Cycle Podcast features the experiences of Sickle Cell Warriors Yolanda Johnson and Shanetta Richardson. Both have Sickle Cell Anemia, SS, which is commonly known as the most severe type of Sickle Cell Disease. Residing in Washington, DC they receive their medical care at Howard University Hospital Sickle Cell Center. These warriors have persevered through many challenges but their hope, faith, and determination will not allow Sickle Cell Disease to define their lives. Through advocacy, they are changing the community. Ms. Johnson participates in clinical trials to help future generations and Ms. Richardson is Founder of I Am Sickle Cell, Inc. Listen to these powerful warriors as they tell their story.

The Sickle Cycle Podcast is a monthly conversation about all things related to Sickle Cell Disease. Explore the complexities of this inherited blood disorder with Charlotte Curtis and special guests. Learn about resources and treatments on ways to improve the quality of life for those impacted by this global disease. Be inspired. Be encouraged. Be educated.