Myelopathy Matters Myelopathy Matters

Iwan and Ben are joined by the winners of the Myelopathy.org Research Award 2023 - Aditya Vedantam and Kajana Satkunendrarajah - for their investigation of how breathing is affected in DCM, with some stark findings and potential implications for our understanding of fatigue.

The prize is awarded by the charity’s scientific steering committee to the best scientific study aligned with one of the research priorities each year. You can read more about the award at https://myelopathy.org/research-award/.

Happy New Year, This month Ben and Iwan hear a UK perspective on the challenges of early diagnosis. They are joined by James Whatley, an advanced physiotherapy practitioner from North London, to hear his perspectives on initial diagnosis and triage. This initial step in the pathway appears to be a critical and common focal point for global interventions to accelerate diagnosis.

In the first of a two part episode, Iwan and Ben speak to professionals tackling myelopathy’s greatest challenge: Diagnosis. Rohil Chauhan is a Physiotherapist working in New Zealand, who was inspired to look more deeply at what are the specific challenges faced by frontline professionals. Rohil also takes the time to answer some of your questions. #myelopathymatters

In this podcast episode, Iwan is flying solo. He interviews Sheila Thomas Duggan, a dedicated volunteer and administrator for myelopathy.org’s support group. Sheila shares her personal experience of living with DCM (Degenerative Cervical Myelopathy) and discusses how she finds it incredibly rewarding to give back and provide support to people facing similar challenges with myelopathy. The episode delves into Sheila’s journey, her insights, and the importance of community and support in coping with this condition.

Iwan and Ben pause for reflection, 10 years since they first came together to create Myelopathy.org (alongside Mark Kotter), and almost 5 years since the research priorities were established in DCM. The community and reach of the charity has grown significantly over this time, which has become a powerful platform for progress. However alongside opportunity, the size also brings operational challenges. It feels like Myelopathy.org is at a tipping point, and to truly kick on we need to focus on growing financial investment. What can be done? Where could this go? Some of the critical topics discussed. If you have ideas or suggestions do get in touch ben@myelopathy.org.

It’s a Myelopathy Matters Exclusive! Iwan and Ben are joined by Myelopathy.org researcher Irina Sangeorzan, to hear about the new Core Information Set. This forms part of a wider project called Shared DCM, and funded by the Evelyn Trust, to help people affected with DCM take a more active role in the decision making around their care. As Iwan likes to say, “Knowledge is Power”. The use of a CIS in this manner is a first for healthcare. We hear why it was needed, how it was formed and what it hopes to achieve.