Daniel is resigning as a trustee and receives our monthly honours in recognition of his service to Pathfinders and the wider community. He took on the trustee role in 2017 after being contacted by our CEO Jon Hastie. He was already aware of the great work of DMD Pathfinders from attending conferences over the years. We’re so glad he said yes!
“I had seen the good work the charity was doing and felt it was important that adults with Duchenne were given a voice”.
Daniel’s decision to get involved with us was heavily influenced by the fact that adults living with DMD are often forgotten, resulting in a lack of planning and organisation.
Daniel comments: “there is very little understanding of the condition in adults, or how to treat us, by medical professionals.”
Since being a part of the charity he has gained a further understanding of DMD and other neuromuscular conditions. “I have seen eloquent and intelligent people in the charity changing others’ views on what it’s like to live with a neuromuscular condition”. He has also learned more about the wider neuromuscular community, networks and the main people involved.
One of Daniel’s biggest Pathfinders highlights was Mark Chapman’s 50th birthday online celebrations. Not letting Covid scupper plans to mark this occasion, he was impressed by how everyone pulled together to put on a virtual event. “It was a huge undertaking with lots of learning and seeing the result with so many people logging in and enjoying themselves was amazing.”
He sees being a trustee as a rewarding experience that requires a commitment to understanding the charity and contributing in different ways. To anyone who’s considering becoming a trustee, Daniel said, if you commit 100% then you will have helped others and made a difference; you gain skills and respect from the community and beyond.
The humble and modest Daniel isn’t one to blow his own trumpet and you probably don’t know about some of the amazing things he’s achieved outside Pathfinders. He has been involved with the NASA WorldWind project, a virtual globe developed by NASA and Open Source community volunteers. At a time of high anxiety, he was able to do this from his bed and worked his way up from small activity to project manager. “It was made even more fulfilling by the fact I never mentioned my condition and being developed entirely online I was an equal and treated no differently to anybody else.”
Some of you may also have caught Daniel’s appearance as an extra on BBCs hit drama ‘The Requiem’. It was completely out of his comfort zone and didn’t quite know what to expect but found every second of it both interesting and exciting.
Daniel isn’t leaving us entirely and is still a member. We wanted to thank him for all he has done as a trustee and we look forward to hearing more from Daniel in the future!