I’m thrilled to be participating in duradash® 2026, an annual fundraising event for the Spinal CSF Leak Foundation. This year’s virtual fundraiser will run from May 24–June 7, 2026. I sustained my leak in 2017 due to a lumbar puncture. Despite four procedures to seal my spinal CSF leak, repairs have not held. My case is complex, and with multiple other conditions that impact treatment tolerance and outcomes, like Ehlers-Danlos Syndrome and MCAS, I am waiting for research to evolve and for me to hopefully get sealed one day.

Despite actively leaking for almost 9 years now, I've been honoured to serve the wonderful spinal CSF leak community by volunteering for the Foundation since 2020. I was invited to join the Board of Directors in 2022, and was asked to step into the Board President in 2024. In addition to donating my time and brain juice to this fantastic organzation, I'm fundraising in support of its mission and its desire to improve the lives of people affected by spinal CSF leak in meaningful ways. 

And for that, I need your help! Each year, duradash® 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. Every donation—big or small—helps me reach my fundraising goal and directly impacts this important cause.

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!

For more about spinal CSF leak in my life, see:

• A spinal fluid leak derailed my life of travel and food, but taught me to find beauty in the small things (CNN)
• “Just fight harder” and other myths about living with a complex spinal CSF leak (from my own site)
• A Better Understanding of Barriers to Care in Spinal CSF Leak (a conversation between Dr. Andrew Callen and me at last year's Spinal CSF Leak: Bridging the Gap conference) 

For this year's activities, I will do 150 minutes of (slowwwww) walking.

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

-Jodi

Update, June 5, 2026: Thank you to all who have donated thus far! I really appreciate it. ??? Wishing you a wonderful weekend, where mine will be spent on those 20 minutes left (I have 130 logged so far for duradash®!) to close out my campaign.

Update, June 7, 2026: We did it! Thank you for the additional donations, leading us to $3000 for spinal CSF leak research and education. With today's market trip for weekly veggies, I am now at my 150 minutes as well. Thanks to all ♥️