Sheffield MND Research Advisory Group Members

Members

Stacy Young (Chair)

Clinical Research Manager and UK MND Speciality Coordinator, based at SITraN.

Mbombe Kazoka (Clinical link)

I have a great interest in research. I strongly believe that those living with the condition should be at the heart of any research, in order to carry out research studies that will help make a difference in the people living with the condition. I hope my experience as a Research Nurse working with people with MND will help in raising the profile of the group.

Annette Taylor (Coordinator)

Clinical Admin Coordinator based in SITraN providing support to the clinical research team and SMND Regional Advisory Group. 

Jane Welby

I am a retired nurse and lecturer. My husband was diagnosed with MND and survived two and half years from the onset of his symptoms. He was quite severely disabled for the last year of his life and it was my privilege to be able to nurse him during this time. It seems whether a sufferer or a partner, there are similarities but also quite significant differences in our experience of this disease. Therefore, I believe it is important that we are all able to provide our unique perspective to help guide research and to ensure that experience is valued and recognised in developing and maintaining a person-centred approach to care. 

Scott Allen (Scientific link)

MND Association Senior Non-Clinical Research Fellow. My research focuses on how MND affects the ability of patients to generate energy and how dietary intervention could help increase the lifespan of patients. I am keen to increase the profile of the disease and to help disseminate scientific findings to patients.

Roger Leek

I lost my wife to MND ten years ago. Chair for Birmingham & Solihull Group MND Association. Member of NIHR-DeNRoN, Clinical Research Network and been part of Trial Steering Committee, Phase 3 Clinical trials at SITraN. Elected NHS Public Governor and PPI rep at NHS England, Leadership Academy in Leeds. 

Philip Brindle

Retired company director in the vehicle rental and leasing industry.  I was diagnosed with MND in March 2015 and have taken part in a number of research projects.  I am a user of the Sheffield Support Snood, and have been involved in two videos to promote its benefits.  I recognise the need for participation in the search for both alleviation of  the symptoms of the disease as well as finding a cure and will endeavour to bring the patient and carer perspective to research projects and proposals.

Graham Taylor

I was diagnosed with ALS in April 2022.

I was working as a Clinical Training Administrator for the GP out of hours service in Leicestershire until June 2023.

I wanted to be part of this group, to try and help others living with this condition, from my perspective as a  motor neurone disease patient.

Dr Rick Nelms

I live on the autistic spectrum. As a freshwater biologist I swam in many lakes and rivers before becoming a sixth form college teacher for 20 years, specialising in learning support for people living with specific learning difficulties as well as becoming Head of Science. My interest in assessment of learning led me to work at the University of Cambridge International Examinations (as it was then called), travelling extensively to train science teachers. As a survivor of childhood abuse I lived with complex PTSD until my early 50s, when several years of specialist therapy set me free from mental distress. Meanwhile I had been developing symptoms of what is now known to be PLS, a rare motor neurone disease. I have become a digital artist, being unable to hold a paintbrush, and I’m an active advocate for people living with MND and other neurodegenerative conditions. 

Daniel Ackerley