The group's mission is to empower and enable patient and public involvement in motor neurone disorders research

Members

SMND RAG currently has members from a variety of backgrounds, united by the common goal of fighting MND.

Michael Hickman (Chair)

Retired telecommunications engineer. My wife had MND and having seen what the disease can do I want to help raise awareness and support those who will eventually find a cure.

Annette Taylor (Co-ordinator)

Based within the SITraN building providing administrative support to the clinical research team and SMND Regional Advisory Group.

Sarah Wyatt

Photographer based in Derbyshire. My lovely Dad has MND so I feel privileged to be involved with the SMND RAG.

Ann Quinn

Visitor with the MND Association. I have experience of MND as an occupational therapist and believe my grandfather died of the disease.

Julie Drakeley

I was diagnosed with MND (ALS) in December 2010. I also work for Sheffield Teaching Hospitals as a manager in a small Quality Improvement team. I am passionate both as a patient and healthcare professional, about improving the journey and support for people living with this devastating illness. There is much work to be done and I want to be involved in any way I can in helping to find new ways to enhance the quality of life of MND patients and their loved ones.

Dave Booker

Retired Maintenance Joiner, I was a full time carer for my wife Margaret who was diagnosed in 2007 with MND.

Like others with first hand experience of this disease, look forward to the day that a cure is found.

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.

Judith Klahr-Parker

My husband, Ernst died last year after suffering from MND. I am now a retired Pharmacist, having specialized in Complementary Medicines, and worked both in Switzerland and the UK. Before my Pharmacy training I worked as a research Biochemist and Pharmacologist. My doctorate included studies on Parkinson’s disease as well as other Neurological and Psychiatric illnesses.
I have also worked more recently as a tutor in a college for young people with learning difficulties.

Ken New

I was diagnosed with MND in May 2015. Given that I tried to keep fit by running and cycling regularly as a pensioner I was surprised with the diagnosis. My big challenge now is to do whatever I can to help researchers discover how to prevent MND and ensure that in the future no one has to deal with the deterioration!

Barry Wilson

Retired business manager in sugar trading I am living with MND. Shortly after diagnosis I decided to get involved in fundraising and awareness by joining my local MNDA branch in Lincoln. I like to spread the message of optimism as one day we will have a cure.


Jane Evans

Regional care development adviser for the MND Association. Research is of vital importance to those affected by MND and this group enables strong links to develop with researchers.

Olga Bannister

Retired physiotherapist. I got involved with MND after my husband died from the condition and now support families as an MND Association branch contact.

Alison Proctor

Alison is the Specialist Neuromuscular Respiratory Physiologist who provides respiratory assessment and ventilatory support for people with MND who are in Respiratory Failure.

Stan Bedford

Retired research worker from the glass industry. I was a full time carer for my wife who had MND so have firsthand experience of how MND affected her life quality.

Alison Fenwick

I work on websites for science & technology companies and also care for my husband Colin. Contributing to and supporting MND research is one small way that something positive could come out of my Husband’s condition and it gives me optimism at a difficult time.

Alison Pickard

I am a Nurse Practitioner and have worked for the GP Out of Hours Service in Derbyshire for several years. I was diagnosed with ALS in 2012. I have had experience of MND in my nursing career and feel I have a useful contribution to make, as I can offer views both as a person living with MND and as a healthcare professional. I will do anything I can to improve the future for MND patients.

Lindsay Lonsborough

I sadly lost my husband Mark last year who had MND for 13 years. I am currently a PA for two clients whom both have MND. I feel I have a lot to contribute not only in a professional capacity but as a full time carer too. I am extremely passionate to get involved in any aspect of research that I can.

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

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.

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.


Associate members

Hannah Hollinger (Associate Member)

Specialist MND Nurse and UK Specialty Co-ordinator. I am keen to increase the profile of MND and give all patients the opportunity to participate in research.

Emily Goodall

Scientist studying MND at SITraN. I got involved with MND research after losing my father to the disease and am passionate about communicating science/research to those affected.

Jonathan Boote (Associate member)

I am a research fellow at the University of Sheffield. My mother has MND and I have recently gone part-time in order to share caring responsibilities with my father. I am keen to be involved in research and fundraising.

Mary Luke (Associate Member)

I am a retired teacher. I lost my husband Tom to MND in 2011. I was his full time carer and would like to share any of our experiences which could help present and future MND patients.

Stacy Young (Associate Member)

DeNDRoN MND Coordinator based at SITraN.

How to join

We always welcome new members so if you would like to find out more please email smndrag@gmail.com.

Full Membership

Full members are invited to attend quarterly face to face meetings and will get monthly updates via email or letter about group activities. There is also the facility to Skype in if the individual is unable to attend the meeting in person.

Associate Membership

A new initiative is associate membership which allows people to join SMND RAG entirely remotely without the need for travel to Sheffield for our quarterly meetings. All you need is access to email and an enthusiasm to get involved.