About Us
The Hydrocephalus and Spina Bifida Initiative (HSI) is a Non-Governmental Organization (NGO) in Uganda that was officially registered in 2017 under registration number 0115, file number MIA/NB/2017/08/95. The organization is based in Katabi, Entebbe Municipality, Wakiso District, and operates as a community focused initiative dedicated to improving the lives of children born with hydrocephalus, spina bifida, and other birth defects, as well as supporting their families and caregivers.
HSI originally began as a community based organization in 2011, founded by Madam Patience Mbabazi. Her motivation came from her personal experience as a mother of a child with hydrocephalus, which exposed her to the challenges, stigma, and lack of understanding faced by many parents in similar situations.
As a single mother, she endured emotional, social, and marital difficulties, including the breakdown of her marriage due to lack of support and awareness from her spouse. Despite these hardships, she remained committed to turning her experience into a source of hope and support for other families facing similar conditions. Over time, HSI grew from a small grassroots initiative into a recognized NGO committed to advocating for the rights and wellbeing of children with birth defects. The organization works to promote awareness, reduce stigma, and strengthen community understanding of hydrocephalus, spina bifida, and related conditions. It also focuses on mobilizing resources and building partnerships between health professionals, community leaders, and stakeholders to improve access to timely, safe, and affordable healthcare services.
Our Focus
Medical Care and Treatment Support
Help children and adults with hydrocephalus and spina bifida access medical services, surgeries, medication, and regular health checkups to improve their health and survival.
Rehabilitation and Therapy Services
Provide physiotherapy, occupational therapy, and assistive devices such as wheelchairs and braces to help beneficiaries become more independent and mobile
Community Awareness and Education
Educate communities about hydrocephalus and spina bifida to increase understanding, encourage early diagnosis, and reduce stigma and discrimination.
Advocacy and Disability Rights
Promote and protect the rights of people living with hydrocephalus and spina bifida by advocating for equal access to healthcare, education, and other social services.
Inclusive Education Support
Help children with hydrocephalus and spina bifida access quality education by promoting inclusive schools, supporting learning needs, and reducing barriers to education.
Family and Caregiver Support
Provide counseling, training, and support groups for parents and caregivers to help them care for affected children and cope with challenges.
Fund the Next Big Thing
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Experienced People
Jessica Brown
Yoni Albert
Christine Eve
David Hardson
Fred Andrew
Sarah Rose
What They Say
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