Now aged 40, Andrew has been a keen volunteer for MDUK over the years. His fundraising activities – including an annual black tie event at Leeds Castle – have developed his knowledge of the importance of campaigning.
Andrew said:
While there may never be a cure in my lifetime to reverse my disease, it is amazing to be part of the push to improve the care and support available, on a daily basis, for people like me.
Andrew’s stand-out moment as a campaigning spokesman and volunteer for MDUK came in 2015, when he attended his first All Party Parliamentary Group meeting and spoke in the Houses of Parliament about the clinical capacity for drug trials.
He commented:
The first time was challenging and difficult, not least because I had to work out the train travel in a wheelchair. I was really nervous as I sat in the chamber, but it was elevating just to go there and once I had managed to start speaking, I couldn’t stop.
As well as this, last year Andrew was involved in a focus group for a self-help book for people newly diagnosed with muscular dystrophy.
He is a key member of the MDUK Volunteer Steering Group, and this year was the volunteer spokesman at the MDUK online limb girdle muscular dystrophy Muscles Matter seminar, sharing his story alongside senior scientists outlining the latest research developments.
This year, Andrew has also started vlogging on YouTube with his son Thomas, aged seven. Their videos cover topics such as parenting and home-schooling. Click here to get a sneak peek before they are released in the New Year.
We look forward to continuing to work with professional volunteers like Andrew to help us unite skills, knowledge and resources in the UK, so we can improve the quality of life for the people living with a muscle-wasting condition, and to bring treatments closer to reality.
For more information on how individuals and businesses can get involved with volunteering at MDUK, please visit: https://www.musculardystrophyuk.org/get-involved/volunteer-with-us/”