Ten years ago this past March, I crossed the street on a cold, windy day and everything changed. I didn't know it at the time, but that intersection was a portal between my Before and After. Because by the time I'd made it to the other side of the crosswalk, I had coughed my way into a spinal CSF leak.

Somehow, my spinal dura mater, the usually tough membrane that encases the brain and spinal cord and holds in cerebrospinal fluid, was frail enough to be torn by the force of my coughing, and through that small tear, precious cerebrospinal fluid began to leak out. The only sign that anything was wrong was a pernicious, constant ache at the base of my skull, at first only whenever I was upright, and eventually all the time. The pain was like nothing I'd ever experienced before, and it was relentless.

But I was lucky.

It took nearly a year, but I was able to find a specialist to diagnose and treat my spinal CSF leak. Luckier still, my leak has not returned.

It has, however, left a lasting mark on me. Not only the lingering sensitivity to intracranial pressure, and the caution around bending, twisting, or lifting; but also the curious development of mast cell activation syndrome, which I learned only after the fact is something that many people with spinal CSF leak experience, and which has been the leak's legacy for me for the past ten years.

This is why I spent from 2018 through 2024 working with the Spinal CSF Leak Foundation, first as a volunteer, then as a board member, and then as executive director. There is still so much we don't know about what causes leaks, how they happen, why they happen, who gets them, why some treatments are lasting and some are transitory. And I was thrilled to be a part of the important work being done to answer some of those questions. Even just connecting with others with spinal CSF leak was meaningful work. Anyone who's experienced that kind of very particular pain understands how lonely it is, how isolating, and how wondrous it can be to find someone else who understands.

Last year, my health took a serious and scary turn—a turn that wasn't directly related to my leak, but rather a lingering consequence of it—that culminated in my stepping down from my work with the Foundation. But even though I'm no longer involved with the Foundation day to day, I still support its mission and ongoing work, which is so important to so many people living with or otherwise afffected by spinal CSF leak.

That's why I'm participating in this year's duradash® 2025, an annual fundraising event for the Spinal CSF Leak Foundation. This year’s virtual fundraiser runs from May 25–June 7, 2025 and 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 happy to say that I'm doing much better after my health scare, and though it's been a slow and continuing recovery, I'll be aiming to walk at least 300 minutes during the course of the event.

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!