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Spinal CSF Leak Foundation
3,933 posts
Spinal CSF Leak Foundation
@spinalCSFleak
A US 501(c)3 nonprofit org that helps raise awareness, educate, & support research on intracranial hypotension & spinal cerebrospinal fluid (CSF) leaks.
Joined July 2014
- We are thrilled to announce the publication of Spinal CSF Leak Foundation medical advisor Dr. Deborah Friedman’s groundbreaking study, “Quality of Life in Patients with Confirmed and Suspected Spinal CSF Leaks”—funded by your research donations.
- Accommodations for patients at the Bridging the Gap conference, courtesy of the CU dept of neurology
- This week is #InvisibleDisabilitiesWeek. Spinal CSF leak is a debilitating, disabling condition that isn't visible from the outside—or even sometimes from the inside, despite sophisticated medical imaging. Learn more about spinal CSF leak here: spinalcsfleak.org/about-spinal-c…
- The Spinal CSF Leak Foundation is pleased to announce two additions to our Medical Advisory Board: Dr. Andrew Callen and Dr. Mark Mamlouk. Welcome! spinalcsfleak.org/announcing-two…
- This statement by Deborah Friedman, MD of @UTSWNeurology validates the profound suffering and associated disability that so many patients with #SIH due to #spinalCSF leak endure. We are so fortunate to have her on our medical advisory board. #becauseyourduramaters
- It's #RareDiseaseDay2023 and we're shining a light on spinal CSF leak, a condition that may be more common than previously thought. #becauseyourduramaters
- Dr. Deborah Friedman's Foundation-funded study: “SIH is associated with...high rates of depression, anxiety, and disability, affecting basic activities of daily living. Improved identification and treatment of SIH are imperative to improve patients’ QoL.”
- Our community deeply grieves the loss of a true advocate, friend, and all-around amazing person, Foundation board vice-president Amanda J. Pickard, PhD: spinalcsfleak.org/in-memoriam-am…
- 🗓️Save the date!🗓️ Join @AndrewCallenMD and the Spinal CSF Leak Foundation for a unique one-day hybrid symposium Nov. 11th bringing patients and providers together to learn from one another. Stay tuned for registration info! #BridgingtheGap #becauseyourduramaters
- Nothing says I love you more than using your voice to advocate for loved ones impacted by #headachedisorders. This Valentine's Day, we are pleased to be once again joining with patients and providers from across the country participating in Headache on the Hill! #HOH2023 @AHDAOrg
- Dr. Peter Kranz on “Anatomy and Pathogenesis of CSF-Venous Fistula” at the 4th Cedars-Sinai Intracranial Hypotension Symposium, Oct. 2, 2021. #SIH2021 #spinalcsfleak @CedarsSinai @PeterGKranz youtu.be/87givoC9BRE
- SNEAK PEEK: Our upcoming “Bridging the Gap” conference on Nov 11 features the voices of patients as well as providers. In this clip, Sarah talks about the importance of understanding that spinal CSF leak is more than just a headache. Register: spinalcsfleak.org/bridging-the-g…
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