67-year-old Ken Blackburn was born in the historic city of York, a place he never strayed far from. He has been married to his wife Kay for over 37 years and together they raised two children, James and Jade.

For Ken his family is everything, he worked hard as a banker for 21 years before becoming a co-owner of York’s leading taxi company in 1995, it was a job that he loved and kept him connected to his community. Until MND slowly began to change everything.

Ken first noticed symptoms in 2015, subtle changes in his speech led to repeat visits to his GP, with no answers. It wasn’t until 2020 that Ken finally received a diagnosis of Primary Lateral Sclerosis, a rare and slow-progressing form of MND affecting around 100 people in the UK.

We spoke to Ken about how MND has changed his life:

“MND has changed my life in profound ways. I was once fit and active, even completing a triathlon in 2012, but now I rely on a powerchair to get around. My balance is poor, and falls have become a dangerous reality. As my voice fades, speech has become a daily challenge, making phone calls impossible and conversations difficult.”

Yet, through it all, Ken has found light in unexpected places. For Ken, a passion for photography that first sparked back in the 1970s became a lifeline. Back then, the cost of film and processing meant Ken didn’t pursue his passions, but the digital age changed everything.

With a camera in hand and editing software at his fingertips, Ken discovered a new way to express himself. His powerchair, once a symbol of limitation, became a tool for creativity, helping him find unique angles and perspectives in nature and landscapes. Photography isn’t just a hobby, it’s therapy. It helps Ken escape the weight of MND, even if just for a moment.

Although Ken will not benefit from the Rob Burrow Centre for Motor Neurone Disease, as he prepares to move to Ireland to be closer to his daughter Jade, he believes it will make a real difference.

Ken’s landscape photography will be on display at the specialist centre when it opens later this year. We spoke to Ken about what this means to him:

“I am absolutely honoured that some of my photographs will be up on the walls of the Rob Burrow Centre for MND. To me, the new centre is a beacon of hope, it represents a new vision, one of warmth, dignity, and tailored support. It is a place designed not just for patients, but for families too. I believe it will transform care, offering comfort and community in a way that traditional hospitals often cannot.”

Ken’s story is one of resilience, love, and creativity. Although MND has taken so much, it hasn’t taken Ken’s spirit. Through his lens, he continues to capture the world, and in doing so, reminds us all of the beauty that can be found, even in the hardest of journeys.