JOIN US AS WE CELEBRATE #leakweek2024

Welcome to #leakweek, our annual awareness week for spinal CSF leak and intracranial hypotension. This year we’re once again teaming up with Spinal CSF Leak Canada and the UK CSF Leak Association to share information, resources, and facts about spinal CSF leak and raise awareness about this debilitating disorder that affects people worldwide.

We began the week with a quote from Dr. Andrew Callen, a neuroradiologist who is also on our Medical Advisory Board. His thoughtful words about the importance of the patient narrative in diagnosing spinal CSF leak were part of his opening remarks at the inaugural Bridging the Gap conference on spinal CSF leaks, November 11, 2023.

Stay tuned all this week for informative graphics, quotes, and the state of research in the field. We’ll be posting daily with slides and info. And don’t forget to wear purple this Wednesday, June 5, to show your support. Tag us in your Instagram stories so we can share your purple looks!

DURADASH® PROGRESS

The first week of duradash®, our virtual activity challenge to raise awareness and funds for spinal CSF leak, has gotten off to an amazing start! Thirty-six fundraisers, cheered on by 146 donors, spent over 3,000 minutes on everything from taking walks to hiking, folding laundry, doing pilates, kayaking, taking a shower, doing aqua fitness, painting, and even putting together a Lego set! We can't wait to see what this next week has in store!

Duradash® runs through June 8, so there’s still plenty of time to support our cause, donate, or cheer us on at duradash.causevox.com!

RESEARCH NEWS AND UPDATES

A new open-access study led by Dr. Ian Carroll in the journal Neurology looks at whether patients with a suspected spinal CSF leak who do not meet ICHD-3 criteria for spontaneous intracranial hypotension still benefit from epidural patching.

The study found that patients did benefit, noting: “Patients who did not conform to the ICHD-3 criteria for SIH showed moderate rates of sustained, clinically meaningful improvements in global physical health, global mental health, neck pain, fatigue, and head pain after EBP therapy. Pre-treatment improvement in head pain when flat was associated with later, sustained improvement after EBP therapy among patients who did not meet the ICHD-3 criteria.”

The paper’s abstract concludes:

IN MEMORIAM

We are deeply saddened to share the news that a wonderful member of our community, Connie Rim, passed away on May 11, 2024.

Connie, a warm and vibrant woman who many of us were lucky to call a friend, spent many hours raising awareness about spinal CSF leak on TikTok, on Facebook, and via fundraisers, creating powerful short videos that shared her complex story in eloquent, honest detail.

In doing so, she helped countless patients and her general audience understand more about spinal CSF leak, as well as the challenges that patients may face in managing the condition.

She brought us with her when she underwent treatments, and took the time and effort to explain her prognosis in detail to help non-leak patients recognize what it is like to live in a body that has undergone so much in the hopes of getting well.

Behind the scenes, she also supported new and long-term leak patients with encouragement and kindness—even when she was in a lot of pain.

Connie, we thank you for your generous spirit, your kind heart, and all that you did to raise awareness for spinal CSF leak.

We miss you, and will always remember you for your incredible advocacy and compassion.

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