Last month, our team had the pleasure of attending the European Network to Cure ALS (ENCALS) meeting, an annual gathering that brings together some of the brightest minds in the field of amyotrophic lateral sclerosis (ALS) research and treatment. Each year, the ENCALS meeting reaffirms the commitment of the scientific community to ending ALS and brings renewed hope to patients and their families. While our team enjoyed networking with attendees and catching up on the latest research in ALS, this year they were also focused on Sano’s poster presentation for an initiative we are calling Light the Way.
For individuals who discover they carry an ALS-causing gene, the emotional toll can be overwhelming and unfortunately, the formal support available to these individuals is surprisingly limited. While experts emphasise the importance of pre- and post-test genetic counselling, the implementation of such support can be inconsistent, leaving significant gaps in care. There is a growing need for the development of new strategies to address these challenges.
Enter Light the Way, an initiative we developed in thoughtful collaboration with scientific advisors and individuals at risk of motor neurone disease (MND), often called ALS in the US. We are excited to share that Sano has secured a £330K grant from Innovate UK to support the development of a platform for those at risk of genetic MND/ALS. This initiative aims to fill the void by offering free and comprehensive support, education, counselling, and essential research connections for those carrying an ALS-causing gene. The grant will cover the initial recruitment of 1,000 participants in the US and UK, of which up to 200 are expected to opt in for genetic sequencing. Once grant funding has been exhausted, Sano plans to develop a pre-competitive consortium of partners to fund the ongoing development and expansion of Light The Way into multiple countries and languages, focusing on territories with the biggest gaps in research and clinical care. The overarching goal of Light the Way is to empower gene carriers, equipping them with the confidence and knowledge necessary to navigate their journeys with resilience and hope.
By providing accessible and valuable resources, Light the Way strives to create a meaningful experience for individuals affected by ALS. It seeks to alleviate the stress and uncertainty that gene carriers may face by offering reliable guidance and a sense of community. The platform will measure the psychological impact of living with a genetic predisposition to ALS through a psychological distress study named Beacon – with updates gathered over a period of nine months. With personalised support and education at their fingertips, individuals can find reassurance and strength in knowing they are not alone in their journey.
Moreover, the impact of Light the Way reaches beyond the individual level. By fostering a network of individuals connected by a shared experience, the initiative also serves as a catalyst for progress in the field of ALS research. As participants contribute their genetic data and insights, they become active contributors to the advancement of scientific knowledge and the search for effective therapies.
The poster we presented at ENCALS is here:
In a world where there is an insufficient number of genetic counsellors to provide timely and adequate support for all those in need, Light the Way stands as a promising alternative, opening doors for individuals who may not otherwise have access to crucial resources. It embodies the power of technology and collective efforts in bringing hope and progress to the forefront of the fight against ALS.
Please watch this space for additional details, or get in touch if you’d like to learn how you or your company can get involved with the Light the Way initiative