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Jodi Ettenberg
link /jodi

Thank you for helping me raise money for spinal CSF leak research and education!

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For the third year in a row, I am excited to be participating in this year's #duradash, a virtual event supporting the Spinal CSF Leak Foundation that takes place from May 26 through June 8, 2024.

As most of you know, I have a very personal connection to spinal CSF leak: I sustained mine in 2017 from a lumbar puncture, and repairs have not held. Despite four rounds of blood and fibrin glue epidural patching, I am unfortunately still leaking

In the years since, I have gotten involved with the Spinal CSF Leak foundation and joined the Board of Directors. I've seen firsthand how donations have helped propel research forward, be it:

  • via funding open access studies about the condition;
  • supporting continuing education grants to doctors who want to learn more about leaks, so they can visit a speciality center and see treatment and diagnosis in action;
  • putting on a conference that shares new findings from physicians as well as patient perspectives;
  • raising general awareness about the condition;

and much more.

As repairs don't hold for me, I've taken a break from treatments in the hopes that eventually research and treatment options will one day find a way to keep me sealed. Supporting the Spinal CSF Leak Foundation is a support for that progress, and I am passionate about the Foundation's mission to help reduce the suffering of all of those affected by the condition.

With #duradash, I am hoping to continue my goals of raising awareness and supporting research by participating in activity appropriate for my current (leaky) state—I'll be walking as I am able, and will be updating throughout the week on my Instagram. My plan is to have local friends and family "Walk a Jodi" over the two weeks of duradash® and I'll be reporting in with stories and updates here

Thanks so much for considering donating to my campaign, and check back here for updates on my #duradash progress.

-Jodi

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