Conference video recap: How participants with ALS/MND are shaping research, care, and policy

The link to the full talk is here; a brief summary is below for easy reference.

About the speakers

Paul Wicks

Dr. Paul Wicks is the Vice President of Neuroscience at Sano Genetics, where he leads initiatives focused on genetic research and precision medicine, including Light The Way. His career includes significant contributions to patient-centred research and clinical trials in neurodegenerative diseases. With a PhD in Neuroscience from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London, and extensive experience in MND research and advocacy, Paul brings both professional and personal insights to his work. 

Highlights from the talk

Paul provides an in-depth exploration of ALS/MND (amyotrophic lateral sclerosis/motor neuron disease), emphasising the need to personalise care by incorporating the experiences of patients and their families directly into treatment and care strategies. Key points included:

• Personalised care: Highlighting the importance of integrating patient and family experiences to tailor ALS/MND treatments and care strategies.
• Patient-led innovations: Showcasing significant contributions from ALS/MND patients in driving advancements in medical technology and treatment protocols.
• Active patient engagement: Advocating for a shift towards patient participation in healthcare, empowering them to influence research, care decisions, and policy.
• Impactful outcomes: Discussing how these approaches lead to more effective and responsive healthcare solutions for ALS/MND and similar rare diseases.

Spotlight on the Light the Way programme

Paul also speaks on the Light the Way programme, which is designed for individuals with genetic ALS/MND or a family history of the disease. This programme, co-developed with clinical experts, genetic counsellors, and people with lived experience, offers free genetic counselling as well as an online support platform to manage logistics, receive education, and connect with peers. 

Summary

This talk explores ALS/MND care, emphasising personalised approaches based on patient and family experiences. It highlighted patient-led innovations in medical technology and advocated for active patient engagement in healthcare decisions. The goal is to empower patients, enhancing research and policy to improve healthcare outcomes for ALS/MND and other rare diseases.

For more, watch the full talk: