Today marks the first anniversary of our official charity launch at the House of Lords. This was a great milestone in the myelopathy.org journey and one I will never forget and which I will cherish forever.
Cervical myelopathy is a condition that is truly life-changing in so many ways both physically and mentally. I was devastated after my diagnosis in 2014 and being told my whole life was about to change. Looking back I could never have imagined the journey I was about to embark on. I have met so many remarkable people since 2014 who I’m now proud to call my friends.
The feeling of devastation after my diagnosis with cervical myelopathy slowly relinquished as I sat at my laptop thinking of ways to raise awareness of this overlooked condition. Slowly but steadily I worked on my Facebook campaign as the constant pain meant I was limited in how much time I could spend on my laptop. Finally, I launched the first Facebook community page for cervical myelopathy and slowly it gathered likes and followers. One follower in particular (Dr Benjamin Davies from the University of Cambridge) led to the start of the amazing collaboration with myelopathy.org. Ben asked me to share my story on the newly launched myelopathy.org website which he had set up with Dr Mark Kotter and after some consideration I finally agreed.
A few months after my surgery I finally met up with Mark and Ben at their Cervical Myelopathy Day in Cambridge. We immediately hit it off and not long after we decided to work together to raise awareness of cervical myelopathy and to make a positive difference to people with the condition. Our online presence grew and the positive feedback drove our passion to create more and more content for the site.
The last five years have seen us go from strength to strength and in 2018 with the help of our new team member Dr Michelle Starkey myelopathy.org registered as a charity in the UK. Myelopathy.org became the first worldwide charity for cervical myelopathy. Since our official launch last May three new trustees have joined the board and the charity has partnered with AO Spine and the James Lind Alliance to establish a research project, RECODE DCM. Health professionals and people living with cervical myelopathy from around the world came together in New York in November 2019 to establish the top ten research priorities for cervical myelopathy research.
We have a long road ahead of us but with the team of volunteers that we are lucky enough to have we can truly make a difference.