Liz Keenan

A devoted mother, fundraiser and advocate, Liz has tirelessly campaigned for the charity while raising her three boys, all of whom live with Duchenne muscular dystrophy. Always up for a challenge, she has tackled some demanding fundraisers, including our Pedal Paddle Peak challenge event in the Lake District. Over the past decade, Liz and her family have raised over £100,000 to support our work.

Isabel Spragg

Described by her mum Louise as a ‘remarkable young carer’, 13-year-old Isabel goes above and beyond to support her brother Harry who lives with Duchenne muscular dystrophy. Helping Harry with day-to-day activities like dressing, washing and feeding, as well as just making him laugh, Isabel’s support is invaluable to her family as she always steps in without hesitation and brings joy to those around her.

Dr Ami Ketley

Based at the University of Nottingham, Ami recently secured one of our research grants to study genetic variations in different tissues of people living with myotonic dystrophy. Using new technology called single-cell transcriptional profiling, results should highlight which potential genes could be targeted for treatments. Ami is also a Trustee of the Myotonic Dystrophy Support Group and actively engages with the patient community, sharing her research at their events.

Sheila Hawkins

A former charity Trustee, Sheila sits on our Services Development and Improving Quality of Life Research Committees and is also President of FSHD Europe.  Living with Facioscapulohumeral muscular dystrophy (FSHD), Sheila brings invaluable lived experience and is a dedicated supporter and volunteer, helping to amplify the voices of FSHD patients to raise awareness and help drive collaboration on advocacy, research, and clinical trial access.

Phil Grant

Well known for appearances in his local area dressed as Wonder Woman, Phil has been fundraising and volunteering for us since 1992. He does this in memory of his son who lived with Duchenne muscular dystrophy, to raise awareness to help others. He has helped to raise vital awareness in the local community and already has a long list of Wonder Woman appearances booked for 2025.

Tom Penzer Adams

Inspired by two friends who live with a muscle wasting condition, Tom set out to run eight marathons in eight weeks to raise £8,000 for us. His challenge saw him travel around the UK as well as taking part in overseas marathons in Tokyo and Boston and organising a community marathon event in his hometown. In total, he ran 209 miles and raised over £20,000.