Just ten days left to apply! Last week, Spinal CSF Leak Foundation opened up applications for our new Patient Advisory Panel for Research. Inclusion of the patient voice in research is crucial, especially in the context of a rare disease, because no stakeholder can...
#duradash this year was a great success, thanks to our enthusiastic, passionate community of people who worked so hard to raise awareness and crucial funds for spinal CSF leak! Today we handed out some awards as congratulations for some of our notable participants....
We’ve been so excited to highlight #duradash participants in our “#duradash spotlight” series! With so many creative and thoughtful ways to “start where you are,” plus the sharing of such a variety of experiences with spinal CSF leak and their hopes for future...
https://youtu.be/UW1PyIq5Gdw In this video from our most recent symposium, caregivers share their biggest challenges and offer words of advice to those who love and care for people affected by spinal CSF leak. Our next symposium is October 2, 2021, and will be a...
Spinal CSF Leak Foundation is launching our Patient Advisory Panel for Research because we believe that inclusion of the patient voice is crucial in moving research forward. As all of our board members, volunteers, and executive director are currently or have been...
For many people experiencing spinal cerebrospinal fluid (CSF) leak, the most prominent symptom is a headache that worsens when upright and improves when lying down. But some patients never experience this kind of orthostatic headache symptom. Kathy Webster was one of...
Arianna Benedetti shared her thoughts with us about how she plans to participate in this year's #duradash. Visit her page to see updates on her progress and give your support! Check out Arianna's #duradash page here! Arianna, 31, began experiencing symptoms of a...
Asia had to fight to have her pain taken seriously as a Black woman with an invisible illness. But she found a community online that helped connect her with specialists who correctly diagnosed and treated her spinal CSF leak. https://youtu.be/EbQsq6Tq9T8 Asia Gibson...
https://youtu.be/HeS9-VlzVn4 In this video from our most recent symposium, people affected by spinal CSF leak share words of advice. Our next symposium is October 2, 2021, and will be a hybrid event, both in-person and live-streaming. Register and find out more...
Casey, a life-long adrenaline enthusiast, runs marathons and races cars for fun. But at 38, he found himself sidelined with terrible head pain. https://youtu.be/mxqnRtRFTt8 Casey Kempner is a self-described adrenaline enthusiast, a multi-sport athlete throughout high...
Melissa Geraghty shared her thoughts with us about how she plans to participate in this year's #duradash. Visit her page to see updates on her progress and give your support! Check out Melissa's #duradash page here! Dr. Melissa Geraghty, a clinical health...
Four grants awarded by the Spinal CSF Leak Foundation are still in progress: Kerry Knievel, DO, and Lea Alhilali, MD, Barrow Neurological Institute. “Quantitative Analysis of Thecal Sac Volume and Morphology as Diagnostic Tool in Intracranial Hypotension.” In this...