Our Founders
Joanne Chazima
Founder
Joanne Chazima serves as the Co-Founder and Executive Director of the Joanne Chazima Sickle Cell Foundation (JCSCF).
Born with Sickle Cell Disease (SCD), Joanne’s diagnosis came at 22 after a severe illness prompted her to seek urgent medical care in Nairobi. Raised in the agricultural town of Kitale, Joanne’s early years were marked by a lack of understanding about her condition. Often misdiagnosed with malaria and other tropical diseases, her childhood was fraught with disruptions, unable to partake in activities like other children.
Tragically, at the age of 13, Joanne lost her elder sister to what was initially thought to be severe malaria. In hindsight, Joanne is convinced that her sister succumbed to the effects of SCD.
This experience highlighted the lack of awareness surrounding the disease, a gap that has claimed many lives.
Upon relocating to Nairobi, Joanne gained access to better medical facilities and a supportive family. Recognizing the disparity in the experiences of those with SCD, particularly in rural areas, Joanne founded the Joanne Chazima Sickle Cell Foundation.
She witnessed firsthand the struggles faced by individuals who lacked understanding, resources, and basic medication to manage the condition.
Motivated by a desire to make a difference, Joanne, alongside the foundation’s Support Group Network, is dedicated to aiding families facing the challenges of SCD. Many children born with the disease in impoverished communities do not reach the age of 5, and families often remain unaware of the condition. Joanne’s mission is to raise awareness, secure support from donors and partners, and extend a helping hand to those grappling with SCD in rural Kenya.
Acknowledging the arduous path ahead, Joanne believes in the power of collective effort. With a committed board, partners, and donors, she envisions overcoming the challenges to assist thousands in need. In her words, “If it doesn’t scare you, then it is not big enough.” Together, they strive to make a lasting impact on the lives of those affected by SCD in underserved communities.
Edwin Masivo
Co-Founder
Edwin Masivo, the Co-Founder and Board Chairman of the Joanne Chazima Sickle Cell Foundation (JCSCF), brings a deeply personal connection to the foundation’s mission. His journey is intertwined with that of his high school sweetheart, now his wife of over a decade, Joanne Chazima, who battles sickle cell disease (SCD).
As a husband, Edwin intimately understands the challenges faced by those with sickle cell disease. Witnessing his wife endure crises and excruciating pain, he empathizes with the helpless feeling of wanting to alleviate her suffering. Despite the emotional toll, Edwin stands by her side, offering unwavering support and encouragement.
Motivated by the strength he sees in his wife, Edwin delved into extensive research to comprehend the intricacies of SCD. He has been a steadfast advocate for her well-being, recognizing the preventable nature of many deaths associated with the condition. It’s a personal journey that has fueled his commitment to making a difference.
Edwin’s dedication is reflected in the foundation’s mission, aiming to provide the best possible healthcare for persons living with sickle cell disease while raising awareness and promoting access to essential services. The foundation envisions becoming a vital instrument for advancing understanding, capacity building, and proper management of the disease
Edwin envisions the foundation as a catalyst for creating awareness, advocating for patient access to insurance services, and influencing policymakers and stakeholders in government regarding sickle cell disease. With a focus on both knowledge dissemination and access to healthcare, Edwin’s vision for the foundation is one of hope and tangible impact.
OUR PARTNERS
The Joanne Chazima Sickle Cell Foundation (JCSCF) is a non-profit organization registered and based in Kenya whose primary goal is to raise awareness about sickle cell disease and provide access to healthcare services in disease-affected areas.