Cauda Equina Champions Charity was officially given charity status on January 10th 2020

Today’s charity has evolved from The Cauda Equina Syndrome Association CIC, a non-profit founded by Claire Thornber in 2013.

Following her own complete cauda equina syndrome injury Claire struggled to access the services and support she needed for her rehabilitation.

She was discharged from the hospital in retention of urine, without catheters and within 7 days had suffered a prolapse.

A phone call to the hospital resulted only in a gift bag containing catheters left for her collection from the urology ward.

Determined to take control of her own rehabilitation Claire fought for the follow up appointments and services she needed from the NHS.

After joining a Facebook group it became apparent she was not alone. There were many people experiencing the same. Lives were being changed forever and nobody had any advice, or seemed to care.

Claire set up a dedicated Facebook support group to share all the information she had learnt and the valuable experiences of other members. Steven Smith – Charity Treasurer and Men’s Group mentor was a founding member and still volunteers his time today to help other members.

From a group of 60 people it has now developed to a membership of over 2,500 people around the world. Members support each other, at whichever stage of their CES journey they may be.

The charity now works alongside medical professionals to help improve pathways, raise awareness and deliver training.

Cauda Equina Champions Charity is proud to be a patient led charity, the staff and volunteers have all been touched by cauda equina syndrome and work hard to change outcomes for the future.

Although it has been a long road to get to where we are today, it is just the beginning of our story ……..