In this webinar, "Light The Way: Lessons learned from a genetic testing, education, and support platform," Paul Wicks shares an in-depth update on the “Light the Way” programme. He explores the methodologies used, the challenges addressed, and the progress made to-date in supporting individuals with genetic forms of motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS).
The link to the full webinar is here; a brief summary is below for easy reference.
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.
Paul kicks off this webinar with an overview of Light the Way, a multinational online platform offering no-cost genetic testing and counselling for individuals at risk of genetic ALS/MND. Launched in the US in December 2023 and the UK this week, the programme aims to improve access to genetic education, testing, and support.
Key components of Light The Way include:
1. Education and genetic counselling: The programme provides comprehensive genetic education modules and access to pre- and post-test genetic counselling. These services help participants understand the implications of genetic testing and support them through the process.
2. Home genetic testing: Through a simple saliva-based test, the programme offers genetic testing for over 40 genes associated with ALS/MND. This non-invasive approach makes genetic testing more accessible.
3. Virtual Waiting Room (VWR): The VWR stratifies participants based on genetic findings and eligibility criteria, which allows for tailored engagement. This platform facilitates ongoing engagement, customised communications, and connection to relevant clinical trials.
Light The Way is tackling two major issues facing the genetic ALS/MND community today. First, it provides genetic testing and counselling availability across different regions. By providing online resources and remote counselling, it bridges the gap for those in underserved areas. And secondly, recognising the emotional burden of genetic testing, the programme incorporates validated questionnaires to monitor anxiety and depression levels among participants. This data will help refine support services and policies.
To measure the impact of the program, we’ll be looking at genetic testing numbers, as well as engagement levels. To-date, over 60 individuals have completed the educational modules and more than 20 have received genetic counselling. Participants in this newly launched programme are expressing a high level of appreciation for the clarity and support provided.
From here, Sano aims to scale the Light The Way beyond the US and UK, targeting multiple languages and regions. The goal is to develop a globally accessible platform for genetic testing and support. For now, Sano is seeking partnerships with pharmaceutical companies, charities, and healthcare systems to enhance its reach and sustainability.
This webinar provided an in-depth look into Sano’s innovative approach to addressing the challenges of ALS/MND research through strategic recruitment, genetic screening, and patient engagement. By focusing on the specific needs of individuals with genetic ALS/MND, we continue to set the bar high in precision medicine and clinical trial efficiency. Watch below for more details: