This Father’s Day, we’re highlighting a reality many families face.
CSF leaks don’t just affect individuals—they impact their ability to be present as parents. Behind the smiles are pain, resilience, and determination.
Help us raise awareness 💙
#FathersDay#CSFLeak
*OPEN ACCESS* In this comprehensive translation study combining human genetics, functional assays, and mouse models we showed that FBN2 mutations increase susceptibility to spontaneous CSF leaks. Science has entered our field @spinalCSFleak@issclsociety https://t.co/SIdczCBu7o
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: https://t.co/UgsJV8Jl9z
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.
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.
💙 Founder David Baldwin's story began with personal experience and grew into a movement to support thousands of others.
💙 Together, we’ve made progress—but there is still more to do.
👉 https://t.co/Kt1KbsriUD
👉 Please Share to help us continue to support patients
💙 One day, Linzi was a fit, active mum - the next, she couldn’t sit upright.
She was told it was “just headaches.”But as her symptoms worsened — dizziness, tinnitus, nausea — she knew something wasn’t right.
👉️ Read Linzi’s story: https://t.co/d6i7n9WTCq
"A subset of postdural puncture headaches (PDPH) persist despite conventional epidural blood patches (EBPs). This report describes the CT fluoroscopy–guided circumferential EBP, a technique that achieves 360° coverage of patching material around the thecal sac."
Tonight the #CNTower will be lit purple for Spinal CSF Leak Week Awareness
Ce soir, la #TourCN sera illuminée en violet pour la Semaine de sensibilisation à la fuite de liquide céphalo-rachidien
Congratulations to the team at WashU Medicine and WashU Neurology on this important work. This research leads the way for non-invasive imaging to locate CSF leaks—reducing the need for invasive procedures and marking a significant step forward for both the field and for patients.
💜 Last night, June 2, 2026, the Esplanade Riel Bridge in Winnipeg was shining purple in recognition of #SpinalCSFLeakAwarenessWeek.
Thank you, the city of winnipeg, for your support, and Corinne Rachel for capturing these beautiful photos.💜
💙 “A diagnosis changed everything.”
It wasn’t until a second opinion in Spain, supported by advanced imaging, that the real cause was finally found:a spinal CSF leak.
👉 Read Ana’s story: https://t.co/b19L4OiU7g
We are thrilled to share that this year’s #SpinalCSFLeakAwarenessweek collaboration has grown from 3 organizations to 5. Together, we're raising awareness, promoting earlier diagnosis, and supporting those living with this highly disabling neurological condition.
"Digital subtraction myelography is a safe and effective diagnostic technique for pediatric CSF leaks, enabling precise localization critical for targeted treatment. Incorporating DSM into the diagnostic workflow may improve outcomes for children with intracranial hypotension."
@TheAJNR My 🔥hot take:
If you aren’t seeing rebound intracranial hypertension after TVE, it’s because you either aren’t embolizing fistulas or you aren’t asking about it