Myelopathy.org

Myelopathy.org is a website about myelopathy, established in 2017 as a collaborative information and support initiative. It was founded by Mark Kotter, an academic neurosurgeon specialising in spinal surgery, and Benjamin Davies, a trainee academic neurosurgeon and Research Fellow. Kotter and Davies initially created Myelopathy.org to engage more effectively with individuals affected by DCM. Their interest in DCM stemmed from their research into regenerative medicine and the development of NHS care pathways. Iwan Sadler, diagnosed with DCM in 2014, felt increasingly isolated and frustrated by the lack of available information and support. In response, he launched an awareness campaign and one of the first Facebook community pages dedicated to DCM. Myelopathy.org received the Points of Light Award from the British Prime Minister in February 2020.

History
Myelopathy.org was registered as a charity in June 2018. The organisation's charitable objectives are focused on advancing health and education in all aspects of DCM.

Myelopathy.org launched its new website in May 2022, providing source of contemporary and evidence-based information aimed at complementing the routine care of individuals with Degenerative Cervical Myelopathy (DCM) and raising awareness among non-specialist healthcare professionals.

Myelopathy.org's peer-to-peer support programme, moderated by volunteers, includes over 3,000 members primarily from Canada, the USA, and the UK. Its research initiatives, like RECODE-DCM with AO Spine, engage professionals from over 60 countries. The organisation disseminates the latest evidence through its podcast "Myelopathy Matters," a blog, and a newsletter.