A new study by a Northampton charity has found that the cost of living with a diagnosis of Motor Neurone Disease is around £12,000 a year.
The MND Association says around £8,000 are struggling to pay for things like home adaptation, specialist equipment and energy bills.
The charity is campaigning to end the financial pressures which it says often overwhelms people with MND and their families.
Dave Solomon was diagnosed with MND nine months before his wedding to Paula who he'd met at a local running club.
Dave is now unable to run, but still does events in a wheelchair. The couple have spent £30,000 on specialist equipment and adapting their home.
They're now featuring in the MND Association's national poster campaign and want to highlight the mental, physical and financial impact of the condition.