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  • Who we are
  1. About us
  2. Who we are

Who we are

Founded in 2006, Stoke Mandeville Spinal Research (SMSR) is an independent, national charity seeking to promote quality of life in people with spinal cord injury (SCI) through research.  Our vision is to enable people with spinal cord injury to have life after paralysis without the setbacks of debilitating health complications.

We work closely with the National Spinal Injuries Centre (NSIC) and other healthcare settings to help deliver the best research outcomes that will improve the quality of life for those living with SCI.

We fund research which improves the quality of life of people living with Spinal Cord Injury

Inspirations

SMSR has evolved thanks to the hard work and inspiration of a few, whose influence is still felt today. The pioneering research in spinal cord injuries undertaken by Sir Ludwig Guttmann, Prof Hans Frankel OBE and Professor Paul Kennedy laid the foundations for our work today.  We are committed to funding innovative research that helps to deepen our understanding and dissemination of best practice in priority areas, each of which affects the quality of life of people living with SCI.

We will be eternally grateful to the dedication of David Tolkien who sadly died in 2014.  David's experience of living with the complications of spinal cord injury inspired the development of our mission to improve the quality of life for people like him.  In addition, his generosity to the charity through his personal trust, allowed us to invest in infrastructure to build the charity in its infancy.  These funds, coupled with a similarly generous gift from The Colin Javens Spinal Trust, were the foundations on which the charity was built.

Professor Paul Kennedy, a founding trustee, took the support of David Tolkien and Colin Javens and galvanised many others to get involved and grow the charity in all areas.  His untimely death in 2016 left a huge hole, and trustees today are determined to continue his legacy of making sure the interests of people living with spinal cord injury are at the heart of all that we do.

Dr Tom Meagher, another founding trustee, sadly passed away in May 2020. In the early days of the initial concept he inspired others with his vision and commitment to establish the charity as a force to help those with spinal cord injury. In more recent times as a trustee he was very generous with his time offering support to the team who work with SMSR, and his experience and wise contributions have been invaluable to fellow trustees. We will miss him greatly and remember him as a kind and inspirational colleague.  We would also like to extend our gratitude to his family, who asked for donations to be made to SMSR in his memory.  We have been overwhelmed by donations from all who knew him and are extremely grateful.  

Our Timeline

Dr Joost van Middendorp was appointed as our first Research Director in 2012.  Since then, we have achieved a number of milestones including:

  • 2013-2014: SMSR funds and collaborates with clinicians from the NSIC on two feasibility studies: Lower-limb exoskeletons for individuals with chronic spinal cord injury and Eye-tracking computer systems for inpatients with tetraplegia.
  • 2013-2014:  In collaboration with the James Lind Alliance, SMSR creates the first UK spinal cord injury priority setting partnership to help guide our research focus on areas that matter most to people living with paralysis.
  • August 2014: SMSR is awarded £281,960 funding from the National Institute of Health Research to conduct a placebo-based drugs trial into the prevention of urinary tract infections in people living with spinal cord injury.
  • December 2014: SMSR together with the James Lind Alliance establishes the Top 10 Research Priorities and publishes these in Lancet Neurology. Click here for details
  • 2015 Findings from the feasibility study Lower-limb exoskeletons for individuals with chronic spinal cord injury is published in Spinal Cord Magazine.  Click here for details
  • Findings from the feasibility study Eye-tracking computer systems for inpatients with tetraplegia is published in Spinal Cord Magazine. Click here for details
  • 2016: SMSR opens the Applied Neurolab in the NSIC to enable research into core areas including assistive technologies for upper-limb rehabilitation and Neuropathic pain management. 
  • 2017: SMSR collaborates with the NSIC to conduct a trial of the SEM Glove to assist with upper-limb rehabilitation and hand function.
  • 2019: SMSR becomes a fully-grant making organisation to fund research in priority areas:  Urinary Tract Infection; Pressure Sores; Neuropathic Pain and Upper Limb function.
  • 2024: SMSR expands its remit to include all research areas with potential to improve quality of life for people with SCI.

Published: 2nd September, 2019

Updated: 13th August, 2024

Author: Patricia Tweed

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National Spinal Injuries Centre, Mandeville Road, Aylesbury, HP21 8AL

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