Our Collaborators

At FND – What Now?, we believe that meaningful change happens when people and organisations come together with a shared purpose.

Our Collaborators and Why They Matter

We are proud to work alongside a diverse group of collaborators who share our commitment to supporting the FND community. Each partner brings unique expertise, resources, and insight, helping us expand awareness, improve care, and provide meaningful support to individuals and families living with FND. Together, their contributions make a real difference in advancing understanding and creating positive change.

How We Collaborate

We work with healthcare professionals, organisations, researchers, and community groups who share our commitment to improving the lives of people with FND. Partnerships may include:

Educational contributions such as webinars, workshops, or guest speaker sessions
Resource sharing to help broaden access to reliable FND information
Co-developing initiatives that support advocacy, outreach, or community well-being
Research collaboration to improve understanding and future care pathways

Current Scientific Insights and Collaborative Interventions

As a patient-led organisation, FND – What Now? NPC values collaborations that bridge scientific knowledge and lived experience. We particularly recognise Prof Chrisma Pretorius of the Department of Psychology at Stellenbosch University, whose commitment to exploring innovative approaches and willingness to share scientific insights continue to bring meaningful value to our journey.

Our growing collaborative work also includes engagement with Prof Leigh van den Heuvel of the Department of Psychiatry at Stellenbosch University and the South African Clinical Neuropsychological Association (SACNA), under the leadership of Dr Erika Steenberg and Dr Sharon Truter. These connections create valuable opportunities to bring the patient perspective into clinical and academic spaces, strengthen professional education, and advance understanding of FND.

Why does this matter? Greater awareness and education can help healthcare professionals recognise FND sooner, reduce diagnostic delays, and improve access to appropriate, evidence-based treatment. For patients, this means a greater opportunity to be understood, believed, and supported through a coordinated, patient-centred approach to care.

By connecting scientific insights, clinical expertise, and lived experience, we aim to help shape a future in which people with FND receive earlier diagnoses, appropriate treatment, and the support they deserve.

Where our journey began (2022)

Our journey was inspired by the 2021 research paper, "The spectrum of functional neurological disorders: A retrospective analysis at a tertiary hospital in South Africa" , by Dr Lavanya Naidoo, then a Specialist Neurologist at Inkosi Albert Luthuli Central Hospital in Kwazulu-Natal. Her work highlighted the needs within the FND community and, through her guidance on starting a support group, shaped the earliest steps of our organisation.

The Start of Our Advocacy

In recent years, we have also been guided by individuals who encouraged and supported the development of our advocacy work in South Africa. We extend our deep appreciation to:

Prof Jon Stone, Consultant Neurologist (NHS Lothian), Honorary Professor at the University of Edinburgh, Department of Clinical Neurosciences
Mr Tom Plender, Trustee and Chair of FND Action (UK)
Ms Kim Rosser (Hearne), CEO and Founder of FND Action (UK)