Members
Kamilah Bailey
Greetings, My name is Kamilah Bailey. I am originally from San Francisco, CA and now reside in Sacramento. I am 45 years old, living with Sickle Cell Disease and Beta Thalassemia. Despite my diagnosis, I am the proud mother of a six year old daughter. I earned my BA in Mass Communication from Grambling State University and MBA from UOP Dallas Campus. Over the past 28 years, I have enjoyed working in various industries; most recently commercial real estate. Sickle Cell Disease temporarily put my traditional career on pause, while beginning my career as a Sickle cell Patient Advocate. Now, my focus is raising my daughter, taking care of my health and advocating for others living with this disease. Over the past 10 years I have served with Whatz Da’ Count on Sickle Cell Trait Awareness, the Pacific Sickle Cell Regional Collaborative and the Sickle Cell Disease Implementation Consortium. My goals as patient advocate are to share my experiences as a patient with the medical community and utilize my knowledge and experience as a professional to improve patient care, hospital policies and procedures until equity in healthcare for Sickle Cell patients has been achieved.
NeDina Brocks-Capla
NeDina's previous background is 20 years of service in the insurance industry as an Executive Manager of the support staff (underwriting assistants and audit assistants) for the underwriting and audit departments at Republic Indemnity of America Workers Compensation. Upon the death of my son, at the age of 36 in 2013 who also had Sickle Cell Disease (SS) I became the Founder and CEO of Sickle Cell Anemia Awareness San Francisco which was established in 2014. The mission of our organization is awareness, education and advocacy. Awareness is always our first focus along with goals to empower through education, advocate for improved healthcare while bridging the gap between people living with sickle cell disease and the medical professionals.
Pat Corley
For more than 25 years, Ms.Corley served as the Adult Sickle Cell Nurse Coordinator at LAC+USC Medical Center where she committed her life to service, advocating for and providing high quality care to patients living with Sickle Cell Disease as the Nurse Coordinator for Adults living with SCD. Now retired she works closely with a number of non profit organizations to advocate and address injustices, misconceptions, bias, inequality in care and empowering patients and families to effectively navigate health care systems in conjunction with Cayenne Wellness Center and Axis Advocacy, two 501c California Nonprofit organizations committed to improving the plight of persons living with Sickle Cell Conditions. Her scope of work currently includes education, lobbying, addressing health disparities and injustice, defining, creating, securing and providing services to this underserved sickle cell community. Ms Corley continues to serve on the International Association of Sickle Cell Nurses and Professional Associates Board of Directors and other advisory committees partnering with non-profits like Cayenne and Axis Advocacy in varying roles.
Poppy Dere
Poppy has been working as a community health worker with the Sickle Cell Disease Foundation for 2 ½ years. She serves as a link between patients with sickle cell disease, and their medical providers, social services and community-based organizations. She works to help increase patients’ access to services and to support patients in improving their health management.
Julie Dunbar
Nakida Fusilier
Renee Hill-Kirby
Renée H. Kirby is a California native.She has been actively involved with various Sickle Cell organizations for the last 20 years. She began her advocacy journey with the UC San Diego Health System and has been involved with organizations like Cayenne Wellness and SCDAA-San Diego. Renée is a Sick Cells Ambassador She remains an active participant with conferences, conventions and Sickle Cell Support Groups. Renée’s goal is to have equitable care for all who are effected by Sickle Cell no matter where they reside.
Jameelah Hodge
Shantí Johnson-Harris
Shanti Johnson-Harris, BSW, is Lead Community Health Worker for Cayenne Wellness Center, and SCDAA’s CHW P.O.W.E.R. award winner for the year 2022. Shanti has specialized in serving individuals living with sickle cell disease in Central California for four years. She is a sickle cell trait warrior, facilitator and navigator of social systems. Ms. Johnson-Harris is a provider of resources, education, and engagement to build bridges to obtain partners to produce collaborative efforts, awareness of sickle cell disease, and positive working relationships with health professionals and community-based organizations. She works diligently to eradicate inequality and injustice within the medical system by advocating and supporting sickle cell warriors to promote successful health outcomes.
Kiara Lofton
22 year-old with Sickle Cell Anemia hemoglobin SS. Pursuing a bachelor’s in Child Development. Hopes to help children with chronic illnesses in the future.
Tamikia McCoy
Tamikia McCoy, who recently founded a new non-profit called Books Before Balls. Tamikia was previously at Youth Uprising, where she organized a bike donation for some of our SCD kiddos this past holiday season. Tamikia’s new work is focused on helping families locate support resources and mental health services, with a special focus on supporting families with sickle cell disease. She’s also connected with the Curry Foundations’ Eat, Learn, and Play Foundation.
Kennaya Ndu
Calvanay Nunley
Kayla Parker
Carolyn Rowley
Dr. Carolyn Rowley is the Founder and Executive Director of Cayenne Wellness Center (a non-profit organization dedicated to health and wellness). In her role as Executive Director, she specializes in nutrition (known for her 3-4-4 nutritional program), health psychology, and treating patients and their families with sickle cell diseaseDr. Rowley has devoted 50% of her clinical psychology practice to the needs of children, adults, and their families with sickle cell disease.
Christelle Salomon
Christelle is a Haitian American, Boston-native, sickle cell warrior who found her home in California 6 years ago. Christelle had been living with sickle cell disease, HbSC, for 28 years until she received a stem cell transplant in January of 2022. Christelle’s experiences as a patient play a pivotal role in her career goals as an aspiring physician-scientist. When she is fully recovered from the transplant, Christelle plans to return to medical school to finish her training. In her free time, she enjoys catching rays on the beach, cooking dishes from all cuisines, and dancing kizomba and salsa.
Adrienne Bell-Cors (Shapiro)
Stephannie Starr
Stephannie Starr is a 58-year-old SS genotype warrior who is a mother of three and grandmother of two, all girls. She is an avid reader who also enjoys public speaking, working with fiber arts, and venturing into some painting. Advocating for other patients is something she has only been doing for the past months. She intends to continue in this field, recognizing how many people are in urgent need of help. She is a junior advocate with Axis Advocacy.
Jeff Towey
After his daughter recommended him, Jeff joined the Community Advisory Board as a way to support people with Sickle Cell and their families. Jeff Towey was born and raised in the Bay Area and has lived in the Sacramento area for the past 16 years. Jeff earned a Bachelor of Arts in Liberal Studies with an emphasis in Ethnic Studies from San Francisco State and a Master’s of Arts in Education in Teacher from the University of Phoenix. Jeff was born and raised in the Bay Area and moved to the Sacramento area in 2005. Jeff is the father of three children and a proud member of Iota Phi Theta Fraternity, Inc. Jeff has worked in education for more than two decades serving as a classroom teacher, intervention specialist, coordinator for a non-profit program, and as a college counselor. In each role, Jeff uses love, humor, compassion, and his ability to build connections for students and staff to support the personal and academic success of young men of color. Currently, Jeff works for Improve Your Tomorrow Inc, a non-profit organization committed to increasing the number of young men of color graduating from college, as the program manager for the programs at Sac State and UC Davis.
Cassandra Trimnell
Cassandra Trimnell is a patient advocate and consultant living with sickle cell disease. She is founder and executive director of nonprofit organization Sickle Cell 101. Trimnell specializes in digital advocacy, building platforms that reach the global sickle cell community – over 50,000 individuals in 115 countries. Trimnell's personal mission is to provide data-driven education initiatives to encourage informed decision making for individuals affected by sickle cell.
Wanda Williams
I have been successfully living with sickle cell (SC) for the past 73 years. My advocacy for people living with sickle cell started as I became one of the founders of the Sickle Cell Community Advisory Council. Some of the activities we have sponsored include Summer Camp for children with sickle cell, Transition Workshops, Support Groups, Holiday Party, and a Speaker’s Bureau. A career in education gave me the opportunity to teach at an Alternative High School, and work as a Supervisor of Child Welfare & Attendance. After retiring from the Hayward School District, I worked as a Social Work Assistant for UCSF Benioff Children’s Hospital Oakland three years in the Sickle Cell Dept.
I’ve been married for 35 years, the mother of 5 children, grandmother of 17 and a great grandmother of 3.