My Journey with a Spinal CSF Leak

Two years ago, my life changed overnight. What began as unexplained head and neck pain turned into a relentless battle with a condition I had never even heard of: a spinal cerebrospinal fluid (CSF) leak. After visiting over 25 doctors, I was finally diagnosed with spontaneous intracranial hypotension. But diagnosis was just the beginning. Since then, I’ve endured invasive testing, multiple procedures—including blood and fibrin patches to over 21 areas of my spine—and even embolization and venous stenting. Yet I still face daily, debilitating symptoms. I’ve spent much of these two years lying flat, unable to sit or stand for long without intense pain. I’ve missed out on precious time with my son, with my family, with life. Spinal CSF leaks are often misunderstood, underdiagnosed, and underfunded. I’m walking (or lying down cheering!) for DuraDash because we need more awareness, better diagnostics, and real hope for those of us still searching for relief. Every dollar raised supports the Spinal CSF Leak Foundation, helping fund patient support, education, and awareness—because no one should have to fight this invisible battle alone. Thank you for supporting me and others on this journey. ? Let’s keep going—together

I'm raising money for the Spinal CSF Leak Foundation!

I’m thrilled to be participating in duradash® 2025, an annual fundraising event for the Spinal CSF Leak Foundation. This year’s virtual fundraiser will run from May 25–June 7, 2025. The duradash® event aims to raise awareness and funds in support of spinal CSF leak research and education, so that more patients living with this under-diagnosed and disabling neurologic disorder are able to receive correct and timely diagnosis and treatment.

The virtual challenge aims for a total of 150 minutes of any activity, to be done at any time, anywhere. The theme is to "start where you are" - to meet people at their current level of ability and encouraging activity meaningful for the individual.

I’m passionate about this cause and need your help! Every donation—big or small—helps me reach my fundraising goal and directly impacts research and funding for this under-diagnosed, debilitating condition.

Here's how you can help:

  • Donate: Contribute whatever you can. No amount is too small!
  • Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!
  • Stay Engaged: Check back periodically for updates on my progress to my activity goal! Share my accomplishment far and wide!

Thank you for standing by me in this effort. Your support means the world to me!

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My Supporters

  • Raven Insignares June 2025
  • Irene Marangi May 2025 $50.00
  • Tom Soja May 2025 $50.00
  • Orlando Rodriguez Always praying for your recovery! May 2025 $26.25
  • Mia Boehler May 2025 $25.00
  • Valerie Hanlon May 2025 $100.00
  • Irene Marangi May 2025 $50.00
  • Tom Soja May 2025 $50.00
  • Bina Hanlon May 2025 $50.00
  • Orlando Rodriguez Always praying for your recovery! May 2025 $26.25