Dr Mark Kotter and Dr Benjamin Davies, from Cambridge, and Iwan Sandler, from South Wales, founded ‘Myelopathy.org’, a pioneering charity that is driving scientific research and support for sufferers of Cervical Spondylotic Myelopathy (CSM), a little known degenerative condition which causes pain and loss of motor skills because of spinal compression.
The NIHR Brain iNjury MIC supported the project and launch of the Charity which took place at the House of Lords in May 2019.
Mark and Benjamin, neurosurgeons at Cambridge University, had initially developed the information and support platform when they were joined by Iwan, a CSM patient who was frustrated by the lack of support available and had created his own Facebook support group which was subsequently merged with Myelopathy.org to create a support community for patients by patients.
In a personal letter to Mark, Prime Minister Boris Johnson said:
“I know you do this with no thought of praise or reward, but allow me to offer my own recognition of how through ‘Myelopathy.Org’ you are promoting research into Cervical Spondylotic Myelopathy, ensuring the best support for patients across the UK.”
In a personal letter to Benjamin, Prime Minister Boris Johnson said:
“I know you do this with no thought of praise or reward, but allow me to offer my own recognition of how you are improving understanding and care of Cervical Spondylotic Myelopathy, redirecting the research agenda.”
In a personal letter to Iwan, Prime Minister Boris Johnson said:
“I know you do this with no thought of praise or reward, but allow me to offer my own recognition of how you have bravely used your own experience to bring together Cervical Spondylotic Myelopathy patients, providing support and a sense of community to the thousands of people with this rare condition.”
Mark, Benjamin and Iwan said:
“We are honoured and privileged to receive this recognition. However, the success and impact of Myelopathy.org would not have been possible without a larger and growing network of passionate volunteers. In particular we would like to acknowledge Dr Michelle Starkey, who leads the organisation on a day to day basis, our trustees and our community moderators.
“Cervical Myelopathy is a progressive form of spinal cord injury caused by arthritis. It is common, affecting around 2% of the population, and most people diagnosed with it will live with life-long disabilities which reduces their quality of life. Increasing awareness of the condition and improving access to timely treatment will improve people’s lives in the future.
“We hope that this award will help raise the profile of Cervical Myelopathy, but also we hope it will encourage others to follow their passions and ideas. In our experience a few small steps can lead to much bigger things and all of us can make a positive change in this world.
“We would like to thank the Prime Minister and the Foundation for shining a light on Cervical Myelopathy – there is still much to be done, but together we can make myelopathy matter #myelopathymatters.”
For more info, please visit https://myelopathy.org
Here below you can read an extract about Dr Mark Kotter and the Launch of Charity from our AUGUST 2019 Newsletter.