There were moments at our charity’s launch three years ago at the House of Lords, when I felt we were struggling to straddle two quite separate worlds: the top class neurosurgeons and neurologists on the one side and, on the other, people living with Degenerative Cervical Myelopathy (DCM), fighting pain, indignity, poverty, and ignorance.
Three years on, we have managed to fuse (pun intended) the two, to close the gaps between users and specialists, people with DCM and scientists, and to work together in respect for each other in our joint venture which is Myelopathy.org. It is, although it does not feel like it every day, a remarkable and possibly unique achievement. It is due in part to the original vision of our co-founders Dr Mark Kotter, Dr Benjamin Davies, and the quiet determination of Iwan Sadler. He and his fellow sufferers who, faced with their own traumatic diagnosis and a vacuum of knowledge, set up a Support Group on Facebook to share experiences and exchange helpful tips.
We are so grateful to Dr Michelle Starkey who was our Director during the early years. She helped get the charity registered. She organised the charity’s launch event at the House of Lords and also our first Spine Symposium. She worked closely with Dr Benjamin Davies to produce and co-host the initial ‘Myelopathy Matters’ podcasts.
Three years on, we have achieved a settled state which bridges those differences and allows us to benefit from the knowledge and inspiration of both groups. We have achieved some level of financial stability, which has enabled us to employ our Director, Zahabiya Karimi, and she in turn has worked imaginatively with scant resources to develop our capacities and lay the foundations for the charity. For example, at last year’s Cambridge Half-Marathon, we were able to raise £15k through donations raised by runners in support of Myelopathy.org. No small gift to our finances and these have been further augmented by research grants which have enabled us to put her appointment on a permanent, if part-time, footing.
Our research projects have not only given us an international profile but brought into focus the relationship between those living with DCM and the medical specialists. For example, ranking preferences for treatment or for diagnostic questionnaires. These are testimony to our user base and their unique input into research projects. Coordinated by Dr Benjamin Davies and our Chair of Board of Trustees Helen Wood, they are one aspect of the way in which Helen has steered us over the past two and a half years, gaining the support of all trustees and expanding our base.
Finally, our newly launched website is a visible manifestation of who we are and we are grateful to the work of fellow trustee Carol Sun-Schuster and her team for the way in which they have managed to express us and make us visible in the Cloud.
Three years on, this organisation has accomplished much with such limited resources and during a global pandemic. As someone who suffers from DCM, I am incredibly grateful and proud to be part of Myelopathy.org.
More is needed to be done, such as raising funds so we can raise awareness, provide support, improve diagnosis and treatment, inspire new research, and build an international community.
I look forward to seeing more great accomplishments the Myelopathy.org community achieves.
Julia Carter
Trustee of Myelopathy.org