Campaign

Prospective research studies in spontaneous intracranial hypotension (SIH) are urgently needed for a better understanding of this disabling neurological condition. An important research study looking at patient outcomes after various treatments and procedures for SIH, in the short and long term, is being planned. Dr. Farnaz Amoozegar, neurologist and headache specialist at the University of Calgary is the principal investigator of this research and hopes to collaborate with other centers in Canada, to advance our knowledge in this field. The goal is to improve patient care and outcomes.

A very generous donor known, as the Band of Brothers, has already contributed $35,000 towards our goal of $50,000, which is required to support the first year of this first in kind medical research. Our total now sits at $38,500.

Please consider donating. Your contribution will play a pivotal role in advancing our understanding of this condition and improving patient outcomes. Please help us get past the finish line!

#TheViewFromHere

As part of Mental Health Awareness Month in North America and Mental Health Awareness Week in the UK, the Spinal CSF Leak Foundation, Spinal CSF Leak Canada, and the CSF Leak Association are partnering together to invite you to help us raise awareness about the mental health impacts of spinal CSF leak by making the invisible visible. 

#TheViewFromHere aims to illustrate and share what life is like with a spinal CSF leak from the point of view of those who live with one. We're inviting anyone who would like to participate to join in by using your phone to take a photo of what you see where you are right now, wherever you are in your journey. This could be a photo of the ceiling of your bedroom, or what you see when you lie flat waiting for an appointment, or something you see that makes you smile or offers comfort or solace to you during difficult times—literally anything from your particular point of view. The point is to capture YOUR experience and share what YOU see as a person with a spinal CSF leak.

Share your photos online on your social media accounts with the hashtag #theviewfromhere and tag us in your posts or Submit your photos to us here, with a brief caption or explanation of what it is or what it represents to you, and we will share it on our social media pages and websites to help raise awareness about life with spinal CSF leak.

Spinal CSF leaks, like countless other medical conditions, can be challenging to cope with, but the solace found through sharing our common experiences can help alleviate our emotional pain. We often feel like we have to hide our struggles, but by sharing our stories,we can create a sense of community and support for those who may be struggling in silence. 

Let’s work together to focus on the things that bring us joy and comfort and promote mental well-being for all.