Our late Founder, KiKi Shepard, worked with the Sickle Cell Disease Association of America (SCDAA) as their National Spokesperson for 10 years. She carried the Sickle Cell Trait and used her national platform to raise awareness for the Sickle Cell community. Ms. Shepard was an accomplished actress, best known as the “Apollo Queen of Fashion,” and for 15 years she served as the dynamic Co‑Host of NBC’s original “It’s Showtime at the Apollo”.
KiKi earned her Bachelor’s Degree in Business Administration from Howard University and was a proud member of Delta Sigma Theta Sorority. Throughout her career, she built strong relationships with organizations such as Herbalife, Xerox, the California African American Museum, Verizon, the Sickle Cell Foundation of Orange County, and the SCD Collaborative, while collaborating with numerous high‑profile celebrities and television productions. She is survived by her sister, Von Gretchen, her nephew, and her two great‑nieces.
KiKi often shared that she had dedicated more than 20 years to raising awareness of Sickle Cell Disease. Her journey began when she witnessed the devastating impact of SCD on the family of a close friend whose brother suffered and ultimately passed away from the disease. Her grief and desire to help led her to volunteer with the Sickle Cell Disease Association of America, where she met families across the country and connected with patients whose bodies and spirits were deeply affected by SCD.
During one visit to Children’s Hospital Los Angeles, a doctor told her he had administered “enough morphine to kill an adult” to a child in crisis - and it still did not ease the child’s pain. Stories like these fueled KiKi’s determination to do more, and her commitment never wavered.
She often emphasized that although bone marrow transplants had long been the only curative option, they were financially out of reach for many families and not always successful. This made awareness and education even more essential. KiKi was particularly passionate about supporting young adults transitioning from pediatric to adult care - many of whom were denied proper treatment in emergency rooms due to a lack of understanding of SCD symptoms and protocols.
KiKi also remained deeply engaged in the evolving landscape of Sickle Cell research and treatment. She was especially excited about recent medical breakthroughs, including the FDA’s approval of two new CRISPR Gene‑Editing Therapies for Sickle Cell Disease. She celebrated the fact that numerous SCD Warriors participating in these new treatments had been declared “cured,” offering long‑awaited hope for a disease that had been overlooked for far too long. To her, it represented a powerful and promising light at the end of the tunnel.
She reminded us that Sickle Cell Disease research did not receive the same priority as similar blood disorders and that it was up to all of us to change that. The need for awareness, research funding, and accessible, life‑saving treatments remained at the heart of her mission.
KiKi believed deeply in the power of awareness and education, often urging everyone. Her legacy lives on through The KIS Foundation, Inc., and through every life touched by her compassion, advocacy, and unwavering commitment to the Sickle Cell community.
“Together we can break the cycle of SCD.”