Claytone Musungu, co-founder of Kenya’s
Meningitis Awareness Foundation, Chair of the Advisory Council of Confederation of Meningitis Organisations (CoMO) and trustee for Meningitis Research Foundation, shares his motivations for becoming a meningitis advocate.
My motivations for becoming a meningitis advocate
My advocacy journey began in 2018 when I found the courage and passion to take action against meningitis. A close friend, who later became my co-founder of the Meningitis Awareness Foundation in Kenya, was devastated by the loss of their partner - who was seven months pregnant - to this deadly yet preventable disease. Their tragic passing was the result of a lack of awareness about the signs and symptoms, as well as a misdiagnosis. Witnessing the devastating impact of the disease on families in Kenya, I knew I couldn’t stand by and do nothing.
My commitment was fuelled by the heartbreaking reality faced by families left isolated due to stigma, a lack of information about this deadly disease, and little awareness of the severe complications meningitis can cause - even for those who recover. In many communities across Kenya, meningitis is not taken seriously enough, as reflected by its exclusion from the National Vaccination Schedule. Since then, I have been a dedicated advocate for meningitis prevention and support for survivors, including representing the voices of those affected in the development of Kenya’s first national meningitis action plan in 2023.
After hearing the stories of
Lillian Karegi and
Babra Kayalo, and learning of many other similar cases, I reflected on the 1989 meningitis outbreak in Kibera, an informal settlement in Nairobi. It became clear to me that action was needed. I felt a deep responsibility to establish an organisation dedicated to tackling the challenges posed by meningitis.
As a result, we co-founded Kenya’s Meningitis Awareness Foundation in October 2018 to raise awareness of the disease and provide support to affected families, caregivers, and survivors. The foundation joined The Confederation of Meningitis Organisations as an Associate Member in November 2018.
Among the many cases we encountered, two stories - alongside those from survivors in Homabay, Nairobi, Muranga, Mombasa, Nakuru, and Nandi counties - strengthened our resolve to continue the fight against meningitis:
Lilian Karegi:
Lilian Karegi, a 40-year-old expectant mother from Vihiga County, developed common meningitis symptoms in August 2018, but they were mistaken for normal pregnancy-related issues. Despite multiple hospital visits, misdiagnosis led to ineffective treatment. As her condition worsened, some relatives turned to traditional healing practices, but tragically, she succumbed to the disease on 13th September 2018.
Babra Kayalo:
Babra Kayalo from Ngong, Kajiado County, was a healthy baby until, at three months old, her mother noticed developmental delays and frequent convulsions. At age two, after a worsening fever, she was taken to Kenyatta National Hospital, where she was finally diagnosed with meningitis. The disease left her unable to walk or talk, though she remains a cheerful child with a deep love for music.
Meningitis Awareness Foundation’s work:
Our charity’s main activities include:
- Raising awareness of meningitis by providing accurate, well-researched information.
- Supporting affected families and survivors through psychosocial and assistive services.
- Amplifying the voices of survivors and their families.
- Organising meningitis-related activities and participates in global health events, such as World Meningitis Day and World Immunization Week.
Meningitis Awareness Foundation’s goals:
We are committed to dismantling the myths and stigma surrounding meningitis. Our goal is to ensure more families are aware of the disease, can protect their loved ones, and that survivors receive the understanding and support they need - both in Kenya and globally. With a national plan for Kenya, a regional strategy for Africa, and the Global Road Map, we have the power to defeat meningitis by 2030.