03/18/2026
The Sickle Cell Disease Association of America, Inc. (SCDAA) mourns the loss of KiKi Shepard, an actress and dedicated sickle cell advocate, who passed away recently at the age of 74. Many knew KiKi as a longtime co-host of the “Showtime at the Apollo” variety show, but she was also the founder of sickle cell nonprofit The KIS Foundation and worked closely with many individuals and organizations in the SCD community, including SCDAA.
In a letter on her website, KiKi says that her advocacy journey began “when I saw the effect on the family of a personal friend whose brother suffered and died as a result of this terrible disease. The strong desire to combat my shared grief and sense of helplessness led me to offer my services to the Sickle Cell Disease Association of America, Inc. Through this national organization, I was introduced to SCD families across America and was able to interact with many patients whose bodies and minds are ravaged by this disease.”
KiKi worked closely with SCDAA until she founded her own organization in the mid-2000s. She served as the moderator of the Lonzie Lee Jones Symposium at the 38th Annual National Convention in 2010 and remained active in the SCD advocacy space throughout her life.
According to a statement released by her family, “KiKi believed that compassion, community and education could change lives. Her voice uplifted countless individuals who often felt unseen, and her work created lasting pathways for hope, resources and understanding for those living with this disease.”
Thank you, KiKi, for your commitment to our cause. We send our sincere condolences to her friends and family for their loss.
