Light the Way

An innovative online support platform for people at risk of genetic ALS/FTD

play-iconWatch the video to find out more

Light the Way

An innovative online support platform for people at risk of genetic ALS/MND

play-iconWatch the video to find out more

Sharing a community-driven resource to meet a key unmet need

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Accelerating a path to hope

Light the Way fast-tracks ALS research by connecting patients and their families with research opportunities, because every second counts in a race against an 18-24 month prognosis. 

For researchers, it offers:


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Participant enrolment

An extensive pool of genetically-profiled participants who are well-informed, appropriately supported, and interested in research – without needing to rely on clinical or academic sites


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Research awareness

The opportunity to significantly boost awareness of observational studies, pre-symptomatic registries, and interventional drug trials in genetically-mediated ALS


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Global reach

The ability to support participants internationally, which is especially critical in areas where access to genetic testing and follow-up support is limited

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From the get-go, voices from the community have been included. It’s been fantastic to get to engage with experts in the field, those who are experts by their experience of living with the condition or being at risk, and community advocates.

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Laynie Dratch

Genetic counsellor

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I’ve been fighting ALS my whole career but, in an expected twist, the fight recently became personal when a close relative was diagnosed and I became a caregiver. Nothing prepared my family for the months of waiting for – fortunately negative – genetic test results. It struck me how dire the situation must be for those who don’t have expertise in the disease, and who can’t access specialists for advice. From that frustration, Light The Way was born.

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Dr Paul Wicks

Vice President of Neuroscience, Sano Genetics

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Laynie Dratch

Genetic counsellor

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Laynie Dratch

Genetic counsellor

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Dr Paul Wicks

Vice President of Neuroscience, Sano Genetics

Light the Way supports 
those impacted by familial ALS/MND

In an era where one in five ALS cases are believed to be genetic, Light the Way aims to comfort and educate those affected by ALS, empowering them with insights into their genetic risk – all at no cost to participants.

For participants, this includes:


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Educational modules

Innovative educational modules supporting genetic education, peer support, pre and post-test genetic counselling, and family planning


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At-home testing

At-home genetic testing, including C9orf72, SOD1, FUS, ATXN2, TARDBP


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Follow-up and 
re-engagement

Longitudinal follow-up and 
re-engagement, including information on relevant research and access to approved gene therapies

Our why

We’re building a future in which every individual at risk of ALS/MND has access to the resources, support, and understanding they need.

Webinar
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Simplified participant journey

Cohesive branding integration

Seamless journey

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Enhanced participant engagement

Optimised efficiency and impact

Improved participant experience

Empower researchers to foster stronger connections with participants with personalised materials.

Achieve more successful outcomes with a simplified journey and increased engagement.

Increase willingness to participate in research studies with participant-friendly portals.

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Real-time accessibility

Stay current with instant access to information and updates for both participants and researchers.

Get involved

Whether you're involved in research, or you're living with or at risk for ALS,
click below to get involved with the Light the Way program.