๐จ๐ฆ National health charity with a vision to improve the health and lives of those suffering from Intracranial Hypotension caused by Spinal CSF Leaks.
Joined December 2018
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As we begin #SpinalCSFLeakAwarenessWeek, we are honoured to share that Canadaโs capital, the City of Ottawa, has officially proclaimed June 1โ7, 2026 as Spinal CSF Leak Awareness Week.
We extend our sincere gratitude to @MayorOttawa
For this recognition.
#SpinalCSFLeakWeek2026
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Spinal CSF Leak Canada Charitable Organization 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/โฆ
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๐ข Save the Date & Register Today!
FREE webinar
๐ Register here:shorturl.at/HB2YN
#SpinalCSFLeak
@AndrewCallenMD
#IanCarrollMD
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๐
๐จ๐ซ ๐ฒ๐๐๐ซ๐ฌ, ๐ฉ๐๐ญ๐ข๐๐ง๐ญ๐ฌ ๐ก๐๐ฏ๐ ๐๐๐ฌ๐๐ซ๐ข๐๐๐ ๐ญ๐ก๐ ๐๐๐ฏ๐๐ฌ๐ญ๐๐ญ๐ข๐ง๐ ๐ข๐ฆ๐ฉ๐๐๐ญ ๐จ๐ ๐ฌ๐ฉ๐ข๐ง๐๐ฅ ๐๐๐
๐ฅ๐๐๐ค๐ฌ ๐๐จ๐ฐ, ๐ญ๐ก๐ ๐๐ฏ๐ข๐๐๐ง๐๐ ๐ข๐ฌ ๐๐๐ญ๐๐ก๐ข๐ง๐ ๐ฎ๐ฉ.
#SpinalCSFLeakAwarenessWeek
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We are honoured to share that Mayor Ken Sim has officially proclaimed June 1โ7, 2026, as Spinal Cerebrospinal Fluid Leak Awareness Week in the City of Vancouver.
SpinalCSFleakAwarenessWeek2026
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๐ Last night, June 4, the Calgary Tower shone purple in recognition of #SpinalCSFLeakAwarenessWeek
Thank you @cityofcalgary @TheCalgaryTower for helping raise awareness of spinal CSF leak & thank you @pmkmann #AnneK. for sharing these beautiful photos.
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Spinal CSF Leak Canada Charitable Organization retweeted
Jun 4
LAST NIGHT: Halifax City Hall and Province House lit-up purple for Spinal CSF Leak Awareness Week. CSF leaks can lead to a debilitating neurological condition known as intracranial hypotension, and patients say raising awareness is the first step in prevention. @SpinalCSFCanada
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We are honoured to share that Mayor Jeromy Farkas has proclaimed June 1โ7, 2026, as Spinal Cerebrospinal Fluid Leak Awareness Week in the City of Calgary.
#SpinalCSFLeakAwarenessWeek
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๐จPatients spread awareness of Spinal CSF Leak in Halifax , NS
globalnews.ca/video/11890049โฆ
#SpinalCSFLeakAwarenessWeek
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Last night, June 3, #NiagaraFalls and the @TourCNTower shone purple in recognition ofย #SpinalCSFLeakAwarenessWeek.
Thank you to the Niagara Falls Illumination Board & the CN Tower for helping shine a light on this often underrecognized condition.
#StandUpForSpinalCSFLeakPatients
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Thank you @TourCNTower / Merci!๐
Tonight the #CNTower will be lit purple for Spinal CSF Leak Week Awareness
Ce soir, la #TourCN sera illuminรฉe en violet pour la Semaine de sensibilisation ร la fuite deโฏliquideโฏcรฉphalo-rachidien
ALT Closeup of the CN Tower at night lit purple / Gros plan de la Tour CN illuminรฉe en violet la nuit
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๐ 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.๐
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We are honoured to share that Mayor @oliviachow has
proclaimed June 1โ7, 2026, asย Spinal Cerebrospinal Fluid Leak Awareness Weekย in the City of #Toronto.
Thank you to Mayor Olivia Chow &Toronto City Council for this important recognition.
#SpinalCSFLeakWeek2026
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We are honoured to share that the Province of British Columbia has proclaimed June 1โ7, 2026 asย #SIH & #SpinalCSFLeakAwarenessWeek. ๐
We extend our sincere gratitude to the Honourable Wendy Cocchia, Lieutenant Governor of British Columbia.
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We are thrilled to share that this yearโs #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.
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Spinal CSF Leak Canada Charitable Organization retweeted
Does CSF only flow in one direction through CSF-venous fistulas or can blood leak back into the subarachnoid space from the venous circulation? In this study we postulate that to and fro flow can happen in these fistulas @spinalCSFleak @issclsociety ajnr.org/content/early/2026/โฆ
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๐๐ข๐ ๐ก๐ฅ๐ข๐ ๐ก๐ญ๐ฌ ๐๐ซ๐จ๐ฆ ๐ญ๐ก๐ #๐๐๐ ๐๐๐ฌ๐ฌ๐ข๐จ๐ง ๐จ๐ง โ๐๐๐ญ๐๐ฌ๐ญ ๐๐๐ฏ๐๐ง๐๐๐ฌ ๐ข๐ง #๐๐ฉ๐ข๐ง๐๐ฅ๐๐๐
๐๐๐๐ค ๐๐ข๐๐ ๐ง๐จ๐ฌ๐ข๐ฌ ๐๐ง๐ ๐๐๐ง๐๐ ๐๐ฆ๐๐ง๐ญ" ๐๐ญ ๐ญ๐ก๐ @CNSFNeuroLinks ๐๐จ๐ง๐ ๐ซ๐๐ฌ๐ฌ 2026.
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A huge thank you to all the incredible physicians who generously shared their knowledge and expertise and helped shine a light on this often underdiagnosed and disabling neurological condition.
Thank you #CNSF for the opportunity.
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Spinal CSF Leak Canada Charitable Organization retweeted
Now online in @TheAJNR :
In patients with suspected #spinalCSFleak but negative myelography, higher spinal compliance was associated with clinical benefit after subsequent empiric blood patching.
Not a decision rule, but an interesting physiologic signal in a tough subgroup.
ajnr.org/content/early/2026/โฆ
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Spinal CSF Leak Canada Charitable Organization retweeted
โClassicโ textbook orthostatic headache was actually more common in the myelography-negative group than in patients with confirmed CVF.
The most common CVF phenotype was instead โpartial orthostaticโ headache: posture clearly matters, but not in the clean binary way we traditionally describe.
This does NOT mean orthostatic headache is unimportant.
It does suggest we may need a more nuanced understanding of what a โgood story for a leakโ actually looks like in low-Bern patients.
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