Our mission is to empower and enable patient & public involvement in motor neuron disorders research

Members

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

Stacy Young (Chair)

Clinical Research Manager & UK MND Speciality Coordinator based at SITraN.

Annette Taylor (Coordinator)

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

Ann Quinn

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

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.



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.

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.

Associate members

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.

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.

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.

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.

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 join meetings by video-call in if the individual is unable to attend meetings 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.