Over the three days, patients, family members, and carers attended sessions on occupational therapy (OT), mental health resources, and speech and communication support, each one meeting people where they are and offering ways to navigate the challenges ahead. 

Joana Valente, an occupational therapist from ParkinsonNet Luxembourg, opened the patient track with a session exploring how OT can help preserve independence and dignity. From adapting the home environment with mobility aids and grab rails, to finding new ways to approach eating, dressing, and work, Joana's talk was filled with real-life examples and achievable strategies. Her message was clear: "We start with what matters to you, not what's 'wrong' with you." Whether it's continuing a beloved hobby or simply making daily tasks a bit easier, OT helps people stay connected to what makes life meaningful. The session also emphasised that OT doesn't work alone, it's part of a collaborative team that includes physiotherapists, speech therapists, and other specialists, all working together to support the whole person. 

Download full session report: https://naadvocacy.org/wp-content/uploads/2025/10/Joana-Valente-Occupational-Therapy-12-Sep-2025.pdf 

Matt Bolz-Johnson, Mental Health Lead at Eurordis, led a powerful session on mental health resources, reminding everyone that emotional wellbeing deserves the same attention as physical health. His talk covered practical tools like cognitive behavioural therapy, mindfulness techniques, and peer support networks, while also introducing Eurordis's new Mental Health & Wellbeing Toolkit. What made the session particularly moving were the breakout groups, where patients, family members, and carers shared their experiences and unmet needs. Common themes emerged: the importance of patient advocates, the value of creative expression through art and storytelling, and the need for holistic care that recognises both the medical and emotional dimensions of living with a rare disease. As Matt reminded us, "Mental health is not a luxury, it's a foundation. Especially when life gets complicated." 

Download full session report: https://naadvocacy.org/wp-content/uploads/2025/10/Matt-Johnson-Mental-Health-Resources-13-Sep-2025.pdf 

The final patient-oriented session was led by Dr Elina Tripoliti, a Clinical Specialist Speech and Language Therapist from University College London (UCL), who brought warmth and expertise to topics that sit at the heart of daily life: communication, eating, and drinking. Elina explained how changes in speech and swallowing affect not just practical function, but also identity and connection. She shared therapeutic approaches like LSVT Loud voice therapy, swallowing exercises, and even the surprising benefits of singing and dance for speech improvement. Her session included practical demonstrations and highlighted the work she's done with Alex Irvine, with videos available on NA Advocacy's YouTube channel. Elina also introduced voice banking technology, which allows individuals at risk of voice loss to preserve their vocal identity. Her message resonated deeply: "Even when speech changes, the person remains. Our job is to keep the conversation going." 

Download full session report: https://naadvocacy.org/wp-content/uploads/2025/10/Elina-Tripoliti-Keep-the-joy-of-communicating-eating-drinking-13-Sep-2025.pdf 

Woven throughout the weekend were other supportive offerings that reflected the symposium's holistic approach. Sally Cowan provided Reiki sessions, a gentle, non-intrusive energy healing technique.

In a truly unique moment, actor and creator José-Miguel (Zé) Figueiredo, who lives with VPS13A disease, performed his boundary-pushing theatre piece "If I Get to Korea, I'll Tell You." The intimate performance reminded everyone that the body is not just a subject of science, but a force of expression, and that art can be both therapy and a powerful form of truth-telling. 

The feedback from attendees was clear: these sessions should be recommended to anyone affected by NA syndromes. Along with information, they offered hope, community spirit, and tangible ways to live well, even when the path becomes complex.