Upright headache? Think CSF Leak... watch this video to find out more: Upright Headache - my spinal CSF leak youtu.be/TJS2g6DNfHA via @YouTube

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/…

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.

𝐅𝐨𝐫 𝐲𝐞𝐚𝐫𝐬, 𝐩𝐚𝐭𝐢𝐞𝐧𝐭𝐬 𝐡𝐚𝐯𝐞 𝐝𝐞𝐬𝐜𝐫𝐢𝐛𝐞𝐝 𝐭𝐡𝐞 𝐝𝐞𝐯𝐚𝐬𝐭𝐚𝐭𝐢𝐧𝐠 𝐢𝐦𝐩𝐚𝐜𝐭 𝐨𝐟 𝐬𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐥𝐞𝐚𝐤𝐬 𝐍𝐨𝐰, 𝐭𝐡𝐞 𝐞𝐯𝐢𝐝𝐞𝐧𝐜𝐞 𝐢𝐬 𝐜𝐚𝐭𝐜𝐡𝐢𝐧𝐠 𝐮𝐩. #SpinalCSFLeakAwarenessWeek

💙 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. 👉  csfleak.uk/news/ten-years-of… 👉 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: csfleak.uk/living-with-the-c…

"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."

"Circumferential Epidural Patch for Postdural Puncture Headache: A Technical Report" doi.org/10.3174/ajnr.A9038

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💜

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:   csfleak.uk/living-with-the-c…

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.

"Locating Spinal Leaks in Spontaneous Intracranial Hypotension: How Many Dynamic Myelographies Does It Take?" doi.org/10.3174/ajnr.A9032 @TDobrocky

"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."

"Under Pressure: Advancing the Diagnosis of Pediatric CSF Leaks with Digital Subtraction Myelography" doi.org/10.3174/ajnr.A9091

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

Check our Editor’s choice for the month: ‘’ Incidence and Predictors of Rebound Intracranial Hypertension after Transvenous Embolization of CSF-Venous Fistulas’’ In this single-center retrospective study, the incidence and severity of rebound intracranial hypertension after transvenous embolization for CSF-venous fistulas causing SIH appeared to be 80%, with 54% of patients experiencing moderate-to-severe symptoms and 7.6% requiring therapeutic lumbar puncture. Treatment of a single fistula and higher preprocedural opening pressures were associated with an increased risk of more severe RIH and need for intervention. ajnr.org/content/47/5/1406

👀 “Why did her symptoms worsen when she stood up?” Trustee Dr Bern Hard’s story featured in ‘That’s Life’ Magazine CSF leak awareness saves years of suffering and leads to timely diagnosis and better outcomes for those affected 💙 #CSFleak #headache #migraine #misdiagnosis