"To stop my MND would mean everything to me. It would be a dream come true."
My name is James. I always imagined the years ahead would be filled with memories made with my wife, Carly, and our three children. But aged 36, after months of tests, I was diagnosed with motor neurone disease (MND). The news was shattering. There is no cure. The chances are MND will take my life before I get to see my children grow up.
It’s the special days - like first days at school, family outings, and birthdays - that have become even more important. With MND, every special day together matters so much.
The day Carly and I were married.
The days our children were born.
Every day we have left to laugh together.
Now we never put things off - we live for the moment, trying to appreciate the good times when they come. Recently, our special day out was simply a family trip to a local bluebell wood. Over coffee and cake afterwards I was taking it all in, enjoying it while I can, because this time next year I might not be able to.
My only hope lies in research.
I must believe that a breakthrough is coming. That's why I took part in a trial called MND-SMART. If there was a treatment to stop my MND progressing it would be a dream come true.
It would allow me to carry on being a dad to my three kids, a husband to my wife.
I could have a relatively normal life again - if I could just stop it in its tracks.
Thank you for giving all you can to help make it happen.
We're making every day matter.
I am still Linda. Fighting and striving to make every day matter...
The day I was diagnosed with MND was awful. Everything changed in that moment.
My body no longer did what my mind wanted it to do. My journey living with MND had now begun.
Mentally and physically, I have to keep going. My son encouraged me to try pottery. After the first 12 weeks the MND Association funded it through their support funds.
That was two years ago and I still go every week! It’s been transformative.
I’m not particularly good, but I can sit for hours, turning nothing into something. It helps my hands. But more than that, it helps my mind. On these special days I can lose myself for a morning and leave calm and refreshed.
I am still Linda… fighting and striving to make every day matter because I too, like so many, live with MND.
My special day? – the day I got my voice back after MND took it from me.
Speaking was a large part of Mike’s life working as a consultant. So, when he was recording a video message during the pandemic and noticed a change in his voice, Mike was immediately filled with horror and concern.
Mike’s voice was changing because he had MND.
He decided to clone his voice using cutting edge technology ElevenLabs.
Looking back on the moment he heard his voice again, Mike said, “When I heard my voice for the first time I was speechless! Tears came to my eyes, shortly followed by laughter. That was my voice!!! The worst symptom of my MND had been overcome.”
How can your donation help?
£20
could help with the cost of home visits to monitor people with MND taking part in clinical trials.
£50
could help provide support funds so families can enjoy a special day out together.
£100
could help towards powering MND research by funding essential laboratory equipment.
