MPs meet to discuss MND research

APP on MND Research

On Wednesday 17 October 2018, the All-Party Parliamentary Group (APPG) on MND met to discuss MND research.

Dr Brian Dickie, MND Association Research Director, spoke to MPs about the research funded by the Association (currently £15m funding a portfolio of 92 research grants) and the annual International Symposium on ALS/MND, the world’s premier scientific meeting on the disease, organised by the MND Association. Dr Dickie highlighted the Association’s strong track record in supporting clinical and healthcare research. However, despite the positives, there are serious concerns around research capacity within the UK health system to sustain the increased number and complexity of emerging treatment trials and Dr Dickie called for greater Government support for this.

Professor Chris Shaw, Professor of Neurology and Neurogenetics at King’s College London, spoke about genetics and MND.  The number of gene discoveries in MND has increased dramatically over the last few years and gene therapy offers future hope for families affected by this devastating disease. Gene therapy has been successfully used in a childhood condition, Spinal Muscular Atrophy, establishing ‘proof of principle’ that motor neurons can be successfully targeted using these cutting-edge technologies.

Liz Tredget, who is living with a genetic form of MND, spoke about having MND in her family, losing her brother last year at the age of 54 and the implications for her children and grand-children. Liz spoke passionately about the urgent need for more research into MND and the willingness of people with MND to be involved.

The MND Association has written to the Secretary of State for Health and Social Care making the case for greater Government support for research capacity and seeking a meeting to discuss this.

We would like to thank over 1,000 supporters who emailed their MPs about the meeting and the following MPs who were represented at the meeting:

Peter Aldous MP (Waveney), Dan Carden MP (Liverpool, Walton), Julie Cooper MP (Burnley), Caroline Dinenage MP (Gosport), Dr David Drew MP (Stroud), Tim Farron MP (Westmorland and Lonsdale), Margaret Greenwood MP (Wirral West), Christine Jardine MP (Edinburgh West), Gillian Keegan MP (Chichester), Karen Lee MP (Lincoln), Andrew Lewer MP (Northampton South), Liz McInnes MP (Heywood & Middleton), Andy McDonald MP (Middlesbrough), Madeleine Moon MP (Bridgend), Anne Marie Morris MP (Newton Abbot), Andy Slaughter MP (Hammersmith), Gary Streeter MP (South West Devon), Mark Tami MP (Alyn and Deeside), Nick Thomas-Symonds MP (Torfaen), Michael Tomlinson MP (Mid Dorset and North Poole), Rosie Winterton MP (Doncaster Central).

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262