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May News from the Spinal CSF Leak Foundation
Join us for duradash® and leak week!
Spinal CSF Leak Foundation
May 13, 2024
In this newsletter:
⭐ Duradash® registration now open
⭐ Exciting and important new research
⭐ Leak week is just around the corner
… and more!
#DURADASH2024 REGISTRATION IS NOW OPEN!
 | Registration is now open for #duradash, a community challenge taking place from May 26 - June 8! During these 14 days, we’re encouraging participants to aim for a total of 150 minutes of any activity, to be done at any time, anywhere, in support of spinal CSF leak awareness. Any movement or activity that you enjoy and that is appropriate for your current state of health counts towards your #duradash goal. |
Last year, participants logged minutes crafting, playing video games, taking photographs, reading to their kids, taking short walks, spending time with their pets, making art while flat, and more—all of which counted towards their 150 minutes of activity.
Whatever activity you choose to do, #duradash is a great opportunity to raise awareness about spinal CSF leak by sharing a little glimpse of your life—whether that’s 150 minutes of everyday life activities, or meeting a specific physical or emotional goal.
Here’s a short video about it:
Our goal is to have 100 people participate, for a grand total of 15,000 collective minutes by the end of #duradash, all to raise awareness and funds to support research for intracranial hypotension and spinal CSF leak.
 | Want to share your #duradash campaign with your friends and family but not sure how? Check out our Duradash® Tool Kit, which includes instructions, messaging templates, graphics, and more! Get it here. |
NEW AND NOTABLE RESEARCH PAPERS
“Bridging the Gap” paper
We are THRILLED to announce that our paper on "Perspectives from the Inaugural Bridging the Gap Conference: A Convergence of Clinical and Patient Expertise" has been published by the American Journal of Neuroradiology! This paper is OPEN ACCESS, meaning it is free to read and to download the PDF.
This paper is notable for a number of reasons: first, we were invited by the journal to write it; second, the authors of the paper include not only doctors and researchers, but also PATIENTS; and third, it is the first of its kind in the spinal CSF leak literature.
We are so happy to finally be able to share it with everyone!
Role of epidural blood patching in SIH
A recently published paper in Neurology Clinical Practice, “Diagnosis and Treatment of Spontaneous Intracranial Hypotension: Role of Epidural Blood Patching,” features among its authors many Foundation medical advisors: Dr. Ian Carroll, Dr. Andrew Callen, Dr. Deborah Friedman, Dr. Simy Parikh, Dr. Jill Rau, Dr. Wouter Schievink, Dr. Jeremy Cutsforth-Gregory, and Dr. Tim Amhrein. This open-access, multi-institution collaborative review on the role of epidural blood patching in spinal CSF leaks—especially in the case of leaks that do not show on imaging—is an important addition to the literature. See the take-home points from the paper below, and read the full paper here.
TAKE-HOME POINTS FROM THE PAPER
Spontaneous intracranial hypotension (SIH) is often difficult to diagnose because of variable symptoms and inconsistent imaging results, including normal brain MRIs and unreliable spinal opening pressures. It is particularly important to consider SIH in patients with connective tissue disorders.
Epidural blood patches (EBPs) are a crucial low-risk treatment of SIH. It is recommended for use even in suspected cases of SIH, despite the challenges in diagnosis.
Early intervention with EBP is important in improving patient outcomes.
There is a need for heightened awareness and understanding of SIH among clinicians and advocates for ongoing research to advance diagnostic and treatment methods.
Relationship between spinal osteoarthritis and CSF venous fistulas in patients with spontaneous intracranial hypotension
A new paper published in the American Journal of Neuroradiology by Drs. Sechrist, Petrucci, Andonov, Lennarson, and Callen suggests a potential association between spinal degenerative disease and development of CSF venous fistula. In the study, CSF venous fistulas were significantly more likely to be present at spinal levels with degenerative changes. The abstract is available here.
And finally, a quality of life paper in The Journal of Headache and Pain by Kapan, A., Waldhör, T., Schiffler, T. et al. assessed the burden of chronic post-puncture spinal CSF leak patients and found that there is substantial disability, limited quality of life, mental health concerns, and significant impact on the ability to work for those patients, highlighting the long-term impact of persistent post-dural puncture headache on individuals, and emphasizing the need for timely diagnosis and effective treatment. The open access paper can be found here.
MORE RESEARCH ABSTRACTS:
LEAK WEEK IS JUST AROUND THE CORNER!
 | 🎗️Starting June 2 and running through June 8, Leak Week is our annual spinal CSF leak awareness week, where we work with our community to get the word out about spinal CSF leak to help more patients living with this under-diagnosed and disabling neurologic disorder receive timely diagnosis and treatment! Once again, we are thrilled to team up with Spinal CSF Leak Canada and the UK CSF Leak Association to make leak week truly international! |
💜 Show your support and raise awareness on “Go Purple Day” this June 5th! Purple is our spinal CSF leak awareness color, and wearing it is a great way to spark conversation. So break out your Spinal CSF Leak Foundation t-shirts, purple outfits, decorative lights, fingernail polish, hair dye, and whatever else you want to use to show your support! Show us your stuff and share on social media using the hashtag #leakweek2024.
We are so thankful for you!
As always, we are so grateful for your support of our mission. We are constantly inspired by the dedication and passion of our community. Thank you for all that you do to help us make a difference in the lives of people with spinal CSF leak!
💜 Your donations make our work possible! 💜
To donate, visit spinalcsfleak.org/donate