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
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1,679 Photos and videos
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Patient voices don’t just matter; they help drive research forward. Sign up today for the ileak registry℠ to support spinal CSF leak research at ileakregistry.org
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Spinal CSF Leak Foundation retweeted
For spinal #CSF leak, gaps in awareness, delayed diagnosis, and limited data have long made it difficult to fully understand how this condition presents, how care is accessed, and what outcomes look like over time.
The @SpinalCSFLeak Foundation’s ileak registry℠ was created to help address those gaps by collecting patient-reported data directly from people living with spinal CSF leak.
Learn more and enroll: ileak.iamrare.org
#SpinalCSFLeak #CSFLeak
ALT Advancing care starts with understanding. Join the ileak registry today! An international patient registry for spinal CSF leak.
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🔍 Meningeal diverticula in patients with spontaneous intracranial hypotension may serve as an additional imaging marker to facilitate CVF diagnostic workup. Read more here (open access): bit.ly/3QpKLDN
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Spinal CSF Leak Foundation retweeted
Proud to have collaborated with the @spinalCSFleak Foundation and a remarkable group of patient advocates on this project. Patients are the true experts on the financial, professional, and emotional costs of navigating a fragmented diagnostic journey. This study helped quantify those burdens and underscores the value of including patients as partners in research.
To quantify the barriers to care spinal CSF leak patients face, the Foundation collaborated with @AndrewCallenMD and @DanielM737 on a patient survey and paper.
We are thrilled to share that it has been accepted by @TheAJNR!
Abstract here: ajnr.org/content/early/2026/…
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To quantify the barriers to care spinal CSF leak patients face, the Foundation collaborated with @AndrewCallenMD and @DanielM737 on a patient survey and paper.
We are thrilled to share that it has been accepted by @TheAJNR!
Abstract here: ajnr.org/content/early/2026/…
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This paper will be open access upon full publication; currently only the abstract is available online ahead of print.
The study results validated what we hear from patients: delayed diagnoses, misdiagnoses, financial strain, & fragmented care pathways are common.
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We are proud that the study is led by a patient author, our Board President Jodi Ettenberg (@legalnomads). Multiple other patients (Kyle Spawn, Aubrey Bolan, & Maisie Smith) are also co-authors.
We are grateful to contribute research on a topic so important to our community. 💜
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Spinal CSF Leak: Bridging the Gap returns this fall!
Presented by @AndrewCallenMD & @CUAnschutz, this hybrid event sponsored by the Spinal CSF Leak Foundation will take place Nov 14-15, 2026.
Admission will remain free for patients.
We look forward to seeing you there!
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Spinal CSF Leak: Bridging the Gap brings patients & physicians together annually to share the newest research in the field, patients' lived experience, & expert advances in spinal CSF leak diagnosis, treatment, & care.
Last year's replays are here: spinalcsfleak.org/conference…
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For the final day of #leakweek, our collaborative slides with @SpinalCSFCanada, @SpinalCSFLeakAu, @csfleakuk & AHIFUGA focused on research.
To start off: recent studies reiterate that the condition significantly affects quality of life across multiple measures.
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At the same time, research has continued to increase exponentially. From isolated case reports on SIH in the 1980s to a robust international research field, to PDPH & cPDPH generating substantial investigation into prevention & treatment approaches, we have cause for hope.
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As awareness grows & consensus guidelines help clinicians recognize the condition sooner, diagnosis is occurring earlier. Access to specialist care is expanding through national & international collaboration, & patient voices are being heard &validated through rigorous research.
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"Circumferential Epidural Patch for Postdural Puncture Headache: A Technical Report"
doi.org/10.3174/ajnr.A9038
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Spinal CSF Leak Foundation retweeted
An important, informative segment about spinal CSF leak on @globalnews. Thank you to @ella_gmac for in-depth reporting and for sharing patient stories during this year’s awareness week!
🚨Patients spread awareness of Spinal CSF Leak in Halifax , NS
globalnews.ca/video/11890049…
#SpinalCSFLeakAwarenessWeek
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Spinal CSF Leak Foundation retweeted
Not long ago, CSF-venous fistulas were unknown.
Then we learned how to find them. Now, we can diagnose & treat in the same session.
In this case, prior research predicted the CVF would arise at/near the largest cyst. CTM confirmed it & intracystic fibrin patched—in 60 min.
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We have 59 landmarks in 33 states lighting up this leakweek! Thank to all who have shared your photos from around the country.
Shine bright💜
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The rest of our amazing landmark light ups.
This year is a record for the amount of landmarks who are lighting up for spinal CSF leak awareness! 💜
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Spinal CSF Leak Foundation retweeted
PURPLE - Lighting up purple for @SpinalCSFLeak Awareness Week to help shine a light on this debilitating and under-diagnosed condition.
Learn more at spinalcsfleak.org.
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Spinal CSF Leak Foundation retweeted
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We are thrilled that this year’s leakweek collaboration has expanded to 5 nonprofits!
Each org brings unique expertise & perspective from their region. We are united in our missions to raise awareness, increase timely diagnosis, & support patients navigating spinal CSF leak.
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