1 October 2025 News
Genetic testing and precision medicine were at the forefront of our first-ever fringe event panel on motor neurone disease (MND) at the Labour Party Conference in Liverpool.
Attended by MND Association Chief Executive Tanya Curry, the debate centred on what needs to happen across research, regulation, and clinical delivery to ensure people with MND have targeted and effective care.
Among the speakers was our Trustee Marc Barlow, who was diagnosed with MND in July 2023.
Marc spent 25 years in the pharmaceutical industry, helping launch drugs and diagnostics for conditions such as epilepsy, multiple sclerosis, Alzheimer’s Disease, Parkinson’s Disease, and stroke.
After receiving his MND diagnosis, Marc and his family experienced a long and anxious wait for the results of his genetic test, not knowing the devastating impact they could have.
He said: “I waited nine months for those results, with others having to wait 18 months or longer, but it was a tense time for the whole extended family.
“Fortunately, the results came back stating there was no apparent genetic component, which was a massive relief to tell my children and my sisters.
“I think we really need to speed up testing and potentially change the approach in order to help people afflicted by this cruel, relentless disease.”
Among the topics discussed were delays in genetic testing delivery, knock-on effects of timely access to potential precision medicine and whether the NHS was prepared for potential extra demand due to the growing importance of genetic testing.
This morning we hosted our first-ever fringe event at a political conference.
— MND Campaigns (@mndcampaigns) September 29, 2025
The #MND community has told us how vital timely access to genetic testing is - and that’s exactly what we were discussing.
Huge thanks to our brilliant panellists: Tanya Curry, Marc Barlow,… pic.twitter.com/H1EGLsEFqo
The MND Association set out four key policy recommendations to remove barriers to genetic testing for people with MND:
- Urgently review and standardise the MND genetic testing pathway, prioritising fast-track testing at the point of diagnosis, consistent referrals, and access to genetic counselling.
- Put in place standardised testing pathways for MND genetic testing in England, Wales and Northern Ireland, supported by appropriate guidance for clinicians and information for patients.
- Ensure the forthcoming NHS Workforce Plan delivers long-term investment in the recruitment, training and retention of the genomics workforce to ensure future demand for genetic testing is met.
- Engage directly with people living with MND, and other conditions with a genetic or inherited component, in the development and implementation of the NHS Genomics Strategy, the forthcoming NHS Workforce Plan, and the NHS 10 Year Plan.
Tanya Curry, Chief Executive of the MND Association, added: “People with MND should have the best possible care as swiftly as possible.
“No one diagnosed with this cruel and often fast progressing disease should be waiting months on end for their genomic test results.
“These levels of delays are simply unacceptable, with this prolonged wait causing potential physical harm and mental distress.
“That is why we have presented our key policy recommendations and want to ensure that people with MND are consulted regarding the NHS Genomics Strategy, the forthcoming NHS Workforce Plan, and the NHS 10 Year Plan.”