For the next few days, Rob and I are raising money for the Spinal CSF Leak Foundation, an organization that helped save my life. It is a small, volunteer-run foundation devoted to raising awareness, educating medical professionals and affected people, and encouraging funding for research for people affected by spinal CSF leaks. 

This year, the Foundation is launching the first ever patient registry for spinal CSF leak patients with the National Organization for Rare Diseases (NORD). After years of being too sick to use my skills as a social scientist and organizer, I am proud to finally be well enough to apply them as a volunteer for the foundation and our new registry. 
 
Your donations to the Spinal CSF Leak Foundation are not a drop in the bucket. This is a tiny organization on a deeply modest budget (the goal this year is to raise $30,000). There are no fancy galas, just an annual meeting run by patients who have recovered, patients who are still sick, and the minuscule-but-passionate number of doctors capable of diagnosing and treating spinal CSF leaks. This group, committed as it is, is not enough to reach the broader medical and patient community without your support. 

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About Spinal CSF Leaks/My Story:

Four years ago, a single Covid infection unmasked a genetic disorder that invited a slew of new, interrelated diagnoses. Far and away the most horrific of these was a spontaneous cerebral spinal fluid (CSF) leak in my spinal column. It condemned me to years of agony that I still struggle to speak about: Nearly an entire year lying flat in a dark room, unable to eat solid food, barely able to speak, look at screens, or tolerate sounds. Two months in Salt Lake City, Utah seeking a diagnosis from specialists. Four failed procedures on my spine, then a fifth one that finally worked. Two years (and counting) of ongoing neurological symptoms after a successful repair. 

This condition also stole more moments and milestones than I can count. It cost me my new job as a tenure track professor. It kept me from being with my mom during her cancer diagnosis and chemo. It kept me from meeting my newborn nephew and attending my cousin’s wedding. Perhaps most heart-achingly, it kept me out of the mundane rhythms of a life with Rob: watching movies, eating meals, walking our dog, and a million everyday decisions that most people make without ever thinking about. Every moment I reclaim through my recovery feels like a miracle. And I’ve reclaimed so many. Everyone suffering from a spinal CSF leak deserves these miracles too. 

Cerebral spinal fluid is the goo that cushions our brains, keeping it from knocking around in our skull and experiencing the equivalent of repeated concussions. People with spinal CSF leaks, whether spontaneous or iatrogenic (i.e., caused by a medical intervention) don’t have enough brain goo, which causes a host of debilitating symptoms, the most notable being the inability to be upright without suffering severe pain and neurological consequences. There is no pharmaceutical intervention to reverse this condition, only invasive procedures. And for some of those suffering with spinal CSF leaks, medicine has not yet advanced enough to treat their manifestation of the disease. 

The vast majority of research hospitals lack the trained physicians and technology to diagnose and treat spinal CSF leaks. Many people go years undiagnosed, misdiagnosed, and untreated. For those who do receive a diagnosis, the waiting list for interventions can be more than a year. Without treatment, the majority of patients with spinal CSF leaks spend all or most of the day lying completely flat, often while continuing to experience severe intolerances to light and sound, cognitive dysfunction, and profound fatigue. 

If you’ve gotten to this point in this post, you might realize I was one of the lucky ones. I was diagnosed within two months and successfully treated within a year. Part of that is luck. Part of that is the privilege of having a spouse who works in medicine. Luck nor privilege should predict how long anyone suffers from this condition. I’m devoted to doing my part to make sure the tide changes for our patient community, and I invite you to do so too. 

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!