Founder & Social Impact Leader
Driving Change for Communities
Transforming Awareness, Systems and Outcomes for Communities Affected by Cauda Equina Syndrome.
Over the past 15 years I have dedicated my time to improving awareness, education and research into Cauda Equina Syndrome. I founded the Cauda Equina Champions Charity, developed national awareness initiatives, and worked with alongside clinicians, researchers and organisations to ensure the patient voice is included in conversations about diagnosis, treatment, rehabilitation and long term outcomes.
I have contributed to multiple research initiatives, collaborated with spinal surgeons and clinicians, and supported projects designed to improve recognition of this devastating condition.
I am passionate about social impact, but more importantly, I design and deliver initiatives that create real, measurable change for communities – influencing awareness, improving systems, and driving better outcomes.
In a society where those with chronic back pain are dismissed or misunderstood, and where unconscious bias persists, I work to shine a spotlight on Cauda Equina Syndrome. My mission is to ensure that people affected by CES have access to the right tools, resources, and support to rebuild their lives after injury, and to move forward with hope, independence, and the opportunity to thrive.
This website exists to share my story and the work I have been involved in, and to make it easier for researchers, clinicians, organisations and most of all the CES community to connect with me.
CES is not “Just Back Pain”
- Cauda Equina nerves control bladder, bowel, sexual function & mobility
- When these nerves are compressed, urgent treatment is critical
- Recognising the symptoms early can prevent life-changing disability
I know from my own experience how difficult life can feel after leaving hospital following surgery for Cauda Equina Syndrome (CES). Finding clear, reliable information and support can be overwhelming at a time when you need it most.
I am proud of my role as a social impact leader working to improve outcomes for people affected by CES through advocacy, education and system change. This platform brings together trusted resources, guidance and lived experience to support your recovery and help you navigate what comes next.
Over many years, I have worked to raise awareness, influence practice and connect communities. Peer support is a vital part of that journey – because connecting with others who understand can make a profound difference to your life.
CES Initiative
Claire Thornber founded The CES Initiative with a simple, but powerful mission. To bring together like-minded people from all over the world. Patients, families, healthcare professionals, researchers, and advocates, who share one goal. To improve outcomes for everyone affected by Cauda Equina Syndrome.
“I have worked with Claire for a number of years now on films for Cauda Equina Champions Charity. Claire is so lovely to work with, has great communication and amazing ideas.”
Sophie Heppell
Co-Founder and Creative Director at North Film Studios“Claire was a patient research partner for developing a core outcome set for Cauda Equina Syndrome. This was an international research effort to identify the most important outcomes for patients and healthcare professionals in future research studies led by Dr Srikandarajah at The Walton Centre in Liverpool, UK.”
Nisaharan Srikandarajah FRCS(SN) PhD
Clinical Spine Fellow, Toronto Western Hospital“Claire Thornber is a strong, intelligent woman who sees solutions where others see problems. I have been her colleague in two capacities; the first as her employee and secondly as her partner in a co-production project between two charities.”