The free programme will be offered to those who are affected by the condition
Sano Genetics has announced the launch of its new platform, Light the Way, in the US, to support those most affected by motor neurone disease (MND).
The programme will provide free peer support, DNA testing, genetic counselling and education to those diagnosed with, at risk of or experiencing symptoms of the condition.
MND is a progressive, incurable and terminal neurodegenerative disease that affects the nerve cells in the brain and spinal cord.
The platform will provide interactive educational resources, developed by genetic counsellors, to educate and help people further understand MND.
Participants will be invited to attend a meeting with a genetic counsellor via video call to learn more about their personal risk, determine whether testing for variants of the disease is right for them, discuss practical concerns, including how results could affect health insurance, and determine whether they wish to receive a saliva testing kit to find out more about their risk of developing MND.
For those who are diagnosed with the neurodegenerative condition and test positive for MND-causing genetic variants, a clinically actionable report will be provided to help access therapies, research and additional support.
Furthermore, MND patients with a variant of unknown significance will be informed of new discoveries to determine whether their risk profile could change in the future.
Additionally, as part of the observational Beacon study, the programme will support patients through a self-report for nine months, which records how they are feeling over nine months.
The collected data will be used to create new policies for those who may be at risk of MND and for those who struggle to access consistent support.
In August, the Light the Way programme received initial development funding of £330,000 from Innovate UK to offer around 150 genetic tests and educational support.
Dr Paul Wicks, scientific advisor for Light the Way, Sano Genetics, said: [The programme] will… raise awareness of observational studies, pre-symptomatic registries and interventional drug trials to accelerate our understanding and development of new treatments for genetically mediated MND.”
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