This week, the Ministry of Health, Aga Khan University’s Brain and Mind Institute (BMI) and Newcastle University have brought together policymakers, researchers, healthcare professionals, advocacy organisations, caregivers and people with lived experience to co-develop Kenya’s National Partnership Roadmap to reduce stigma surrounding epilepsy, Parkinson’s disease and other neurological conditions.

The roadmap builds on Canvas for Change, a British Academy-funded project led by the Brain and Mind Institute in collaboration with Newcastle University. Through participatory theatre, community dialogue and documentary storytelling, the project explored how stigma affects people living with neurological conditions and created space for communities to share experiences that are too often left unheard.

Those conversations revealed that stigma can become another burden for people already living with neurological conditions. “The stories we heard showed us that stigma can be as limiting as the condition itself,” says Dr Mary Bitta, Principal Investigator of Canvas for Change. “Bringing those experiences into policy is how research creates lasting impact.”

That journey, from listening to communities to shaping national policy, is exactly what the retreat hopes to achieve.

At the Brain and Mind Institute, the belief has always been that research should extend beyond generating evidence. “Research should not end in academic journals. Its greatest value is realised when it informs policy and improves people’s lives,” reflects Prof. Zul Merali, Founding Director of the Institute. Bringing researchers, policymakers and people with lived experience together, he says, creates the best opportunity for evidence to influence decisions that improve lives.

The retreat also marks an important milestone in Kenya’s implementation of the World Health Organization’s Intersectoral Global Action Plan (IGAP) on Epilepsy and Other Neurological Disorders, particularly Target 1.2, which calls on countries to establish awareness and advocacy programmes that address stigma and discrimination.

For the Ministry of Health, the roadmap represents an opportunity to coordinate action across sectors and ensure that people living with neurological conditions can access care without fear of judgement or exclusion. “This roadmap brings partners together around a shared goal, to ensure people living with neurological conditions are supported and able to access the care they need,” says Dr Mercy Karanja, Director of the Division of Mental Health.

The strength of the roadmap lies not only in the evidence behind it, but also in the people helping to shape it. Throughout the retreat, participants are reviewing research findings alongside the experiences of people living with neurological conditions and their caregivers, identifying priority actions and partnerships for implementation.

That approach has been central to Canvas for Change from the outset. “People living with neurological conditions have been at the heart of this work from the beginning. Their experiences should help shape the solutions,” says co-Principal Investigator Dr Natasha Fothergill-Misbah, Newcastle University.

Among those contributing to the discussions is Nduta Macharia, who lives with Parkinson’s disease. For her, the importance of the roadmap extends far beyond policy. “One of the hardest parts of living with Parkinson’s disease is the misunderstanding that surrounds it,” she says. “I hope this roadmap helps replace assumptions with understanding.”

By the end of the retreat, participants are expected to agree on the roadmap’s priorities and the partnerships needed to move them forward.

As Kenya marks World Brain Day, the discussions in Naivasha reflect a broader shift, from understanding stigma to addressing it. More importantly, they demonstrate how research, when shaped by lived experience and embraced by policymakers, can help create lasting change.