Sano Genetics has launched its groundbreaking Light the Way initiative, which offers a UK-wide genetic testing programme for families affected by Motor Neurone Disease (MND).
Light the Way – launched in London on 12 June – is backed by government funding from Innovate UK and led by Sano Genetics with a consortium of MND research specialists.
The programme will offer over 200 free genetic tests to those at risk of MND’s most common form, ALS. Light the Way’s educational resources and tailored genetic counselling are also available to individuals with a family history or a diagnosis of MND where they have already taken an approved genetic test.
Almost 90 per cent of MND sufferers have ALS - amyotrophic lateral sclerosis. MND is the name given to the group of diseases in which the nerve cells (neurones) that control muscles undergo degeneration, leading to the progressive loss of voluntary movement.
The news comes at a time when around one in five cases of MND are believed to have a genetic component. Awareness of the disease has skyrocketed following the recent death of ex-rugby league player Rob Burrow from MND at the age of 41 – the most high-profile loss since the death of Stephen Hawking to the disease in 2018.
By signposting testing at-risk communities for key genetic variants, Light the Way will foster an education programme and support people with MND earlier, as well as ensuring genetic counselling is available to those affected, and ultimately to facilitate their access to crucial clinical trials.
Dr Paul Wicks, vice president of neuroscience, and scientific advisor on Light the Way at Sano Genetics, said: “MND is a fatal disease that demands urgent action.
“My work to combat the condition recently became more personal after a relative was diagnosed, and I witnessed first-hand how challenging it was to secure the right information and support for our whole family throughout the process.
“Light the Way was born out of this frustration: helping individuals in the same situation to find research studies and trials and in turn, helping entire families manage their risk and the news of finding out they might carry a critical genetic variant.
“If people aren’t aware they have the variant, they can’t access emerging treatments. As more therapies are developed, the need to offer testing to these individuals is more important than ever.”
The Light the Way programme has been built and powered through a tech platform developed by Sano Genetics. Those registered for the initiative will be connected to a genetic counsellor to help them discuss whether testing is right for them. Participants will then receive a non-invasive, saliva-based DNA test kit to use at home.
During and after the testing process, Light the Way programme participants will continue to receive genetic counselling alongside support from peer networks.
Participants will also be provided with updates on appropriate research opportunities as they arise.
Prof Ammar Al-Chalabi, chair of the Light the Way scientific and patient advisory board and co-director of the UK MND Research Institute, says that “we are at a critical point for understanding and treating MND” and adds: “We are delighted to be supporting the Light the Way programme, which represents a promising milestone for making genetic education, testing and related support more accessible for people affected by and living with MND.”
Charlotte Guzzo, Sano Genetics co-founder and chief operating officer (COO) told the Cambridge Independent that the Sano Genetics team – now up to 75 since emerging from the Accelerate Cambridge programme at Cambridge Judge Business School in 2017 – is “delighted but too busy to celebrate”.
She said: “By facilitating more widespread access to no-cost genetic testing, we also stand to accelerate the scientific research and understanding that goes into new treatments for genetically-mediated variations of the condition, increasing the options and support available to patients.”
Sano Genetics, which raised $11.4m in an investment round at the start of the year, will retain its role as an honest broker in the sector.
“We will never be a paying service, it’s just a question of where funding comes from,” Charlotte says. “We have a few partnerships lined up but absolutely at no point will we be charging, we’re not a direct-to-consumer company.
“Light the Way is a research initiative.”
