Meet our new trustees

Marian brings extensive leadership and governance experience to her role as our new Vice Chair. She is a trustee of The Children’s Trust and Home-Start Merton, and until recently Chief Executive of Evelina London Children’s Hospital.

With nearly 20 years’ Board experience at Guy’s and St Thomas’ NHS Foundation Trust, Marian has managed relationships with regulators and commissioners across health, education and social care, worked with a range of voluntary sector organisations, built partnerships, led growth, and championed equity, diversity and inclusion.

Alongside her extensive healthcare and charity trustee experience, Marian is motivated by memories of individuals and families affected by muscle wasting conditions who she has known over the years, both personally and during her time at Evelina London. Her insight into the challenges they face is what inspired her to want to work with us to achieve a world without limits for our community.

Ros joins us as a trustee following her retirement from the NHS where she worked for over 40 years, dedicating her career to supporting people living with neuromuscular conditions.

After training as a paediatric neurologist, Ros began working in muscle disease in 1990, becoming the first Muscular Dystrophy UK clinical research fellow to be appointed at Guy’s Hospital. During her career, she has cared for people of all ages and held a range of consultant roles, including at Birmingham Children’s Hospital, Great Ormond Street Hospital, and Queen Square Centre for Neuromuscular Diseases.

We’ve been part of Ros’s professional life from the beginning – from her first research fellowship and research grants to her supporting our campaigning. We’re delighted that she now joins us as a trustee to help guide our work moving forward and ensure neuromuscular medicine continues to grow and our community get the support they need.  

Recently retired from clinical practice, Simon is the National Clinical Director for Heart Disease for NHS England and Deputy Chair of the British Heart Foundation. Until April 2025, he worked as a Consultant Cardiologist at Manchester University Hospitals. During his 30 years as a consultant, Simon ran a clinic where he saw young people with muscle wasting conditions, following their transition from paediatric services, and he worked closely with colleagues in the muscle and non-invasive ventilation services to improve the coordination of care across specialist departments.

Simon brings both professional and personal experience to his role as one of our new trustees as his younger son was diagnosed with Duchenne muscular dystrophy at the age of two and sadly died in September 2024, aged 24.

During his career, Simon has been actively involved in research and is an advocate for compassionate, coordinated, patient-centred care for people living with muscle wasting conditions and their families. 

Currently a Digital Director at the NHS, Tom has vast experience of managing digital and transformation projects as well as leadership within the healthcare and life sciences industry.

Tom’s operational experience is complemented by his insight into healthcare systems and leadership in digital and strategic transformation. He also has a personal connection to the charity as his young son lives with Duchenne muscular dystrophy.

Tom has experienced first-hand the benefit of receiving the right support from charities and wants to work with us to ensure that all individuals and families living with muscle wasting conditions get the help and support they need.