Each year, Child-Help International (CHI) presents an award to someone who has made an exceptional difference for children and adults living with spina bifida and hydrocephalus. In 2025, the focus was explicitly on national networks for change—strong, locally rooted networks that drive sustainable, structural impact.
For the first time, the award was presented to a duo: Ruth Nalugya and her 12-year-old daughter Blessing Kerstin Akuzwe. Mother and daughter together represent a powerful team for change.
Ruth Nalugya leads SHAU, the spina bifida community in Uganda. Under her leadership, SHAU has grown into a strong national network, forging partnerships with other parent groups, civil society organisations and government actors. The network focuses on access to care, awareness raising, advocacy and inclusion—driven by parents and people with spina bifida themselves.
Blessing Kerstin Akuzwe was born with spina bifida. Despite her young age, she already plays a visible role within the movement. Through her singing and video clips, she helps create a more positive and empowering image of spina bifida. She has also produced awareness videos for peers and families, speaking from lived experience with confidence, creativity and hope.
Together, Ruth and Blessing show how change happens when care, self-help, creativity and leadership come together. Their work increases visibility, challenges stigma and strengthens the voice of families at both local and national level.
The award was presented on 3 December 2025, during the opening of the SHARE Knowledge Centre in Moshi, Tanzania. A meaningful moment: the recognition of a national network for change, celebrated within an international knowledge centre dedicated to accessible and affordable care.
With this award, CHI honours not only two remarkable individuals, but also the power of local networks, lived experience, and working together towards an inclusive future.
