Our Advocacy

Cauda equina syndrome (CES) is a very complex and misunderstood disease. Its lack of research and the rarity has so many people, healthcare providers included wondering, "Just what is cauda equina syndrome ?". This page is dedicated to our cauda equina syndrome advocacy projects where we explore what CES is to those it impact the most- the patient.


We use a variety of ways to show the world what cauda equina syndrome (CES) is, from setting up at conferences & lectures, to various PhotoVoice Projects to smash the misinformation circulating around about CES and showing the lived experience. 

Scroll through our advocacy projects to as we answer the ultimate question, "What is the true impact of cauda equina syndrome?"

PhotoVoice Project

For Rare Disease Day 2020, Cauda Equina Foundation led a PhotoVoice Project to show the community what living with cauda equina syndrome is like, the good, the bad, and the ugle. Click on the photo below to watch our photovoice project video. 

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Many Faces of Cauda Equina Syndrome Advocacy Campain

Were you told that you were "too young to have CES", "too strong", too, well anything? That is what this campaign was all about, showing the many faces of individuals that have been diagnosed and are still living with cauda equina syndrome due to delayed or missed diagnosis. Click the image below to watch the video of the Many Faces of Cauda Equina Syndrome.

Project Teach Cauda Equina Syndrome Red Flags to Healthcare Providers

Project Teach, at Rare Disease Day 2019, was all about making sure that healthcare professionals knew the cauda equina syndrome red flags and were comfortable enough with this topic that they could advocate on behalf of their patients for MRIs or other tests and neurology or neurosurgeon consult.