Update:

WE MET OUR $20K GOAL!!!

Thank you to everyone who generously gave to help us get to this point. You resharing the page, leaving encouraging words, donating, and cheering me on along the way has meant so much. We're humbled to have the support and trust of such a wonderful community and support system.

We couldn't have done it without you!!

Progress: 525/500 minutes

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4,980 miles traveled for care

500+ days in unremitting pain

20+ hours a day spent laying flat

3 CT myelograms (4 lumbar punctures) to find my leaks

Endless suffering.

This is what I experienced during my latest round of spontaneous intracranial hypotension, caused by multiple spinal CSF leaks.

This condition transformed my life. I went from being a young engineer getting ready to marry the love of her life to nearly bedbound in a matter of weeks. I could only tolerate being upright for short periods of time, carefully planned and with devastating consequences afterwards.

Most people haven't heard of spinal CSF leak, but its effects on those who suffer from it are practically unparalleled. In a study attempting to quantify spiritual suffering in patients with chronic disease, it was found that patients with symptomatic spinal CSF leak had significantly worse well-being scores than patients with AIDS or cancer. Many leak patients admitted to suicidality, and unfortunately it is a regular occurrence to see death announcements in spinal CSF leak support groups.

When I was upright for extended periods of time, I felt an incredible tugging pressure in my skull, as if my brain was being vacuumed down into my neck. My neck muscles were so tight, it felt like they were strangling me. I experienced memory loss, and cognitive dysfunction akin to dementia or drunkenness. And these symptoms were my daily constant companion, which began as soon as I lifted my head off the pillow and grew to a roar. The only reliable relief I could count on came from laying down, which I did for 20+ hours a day.

Spinal CSF leak is more profoundly difficult and painful than anything I have faced in my life, or hope I will face again.

This is why I use my time now, as someone recovered from spinal CSF leak, to fight for those who have not been so fortunate.

This year, I’m thrilled to be participating in duradash®, an annual fundraising event for the Spinal CSF Leak Foundation. This year’s virtual fundraiser will run from May 25–June 7, 2025.

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. As every instance of my spontaneous intracranial hypotension has begun after a period of increased exercise, I'll be playing it safe and walking as my duradash activity :) My goal is 500 minutes of walking, as I'm significantly more active than I was able to be previously.

Every donation—big or small—helps me reach my fundraising goal and directly impacts research and funding for this under-diagnosed, debilitating condition. Even $1 would be so appreciated!

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!