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Hi! My name is Emily and I'm raising money to treat craniocervical instability, a condition where the ligaments holding my head to my neck are damaged and too loose. This causes excessive movement of the vertebrae at the top of my spine, and because there are a lot of essential neurological and vascular structures in this space (brain stem, spinal cord, vagus nerve, veins, arteries) excess movement leads to a whole host of debilitating problems.

I'm raising money for a procedure called Percutaneous Implantation of the CCJ Ligaments (PICL) to tighten up these ligaments and protect these important structures from compression. My goal is to raise $17,000 to cover the cost of one PICL procedure ($15,631), plus flights and lodging for myself and a caregiver. PICL is not covered by insurance, and as someone with multiple complex chronic health conditions who hasn't been able to work for several years, my immediate family and I are already burdened with out of pocket healthcare and basic living costs, so wider community support has become important.

Who am I?

Before I became severely disabled I was a documentary filmmaker, cinematographer, teacher, and environmentalist. I grew up in Virginia, studied environmental policy and art at William and Mary, worked in environmental consulting in DC, and then moved to the Bay Area to get my MFA in documentary filmmaking at Stanford. After graduating, I taught film studies at Santa Clara University while also working on projects as a director, cinematographer, and editor, including pro bono work for local climate justice groups. In my free time I loved exploring the outdoors and could often be found backpacking deep in the woods. I loved my life! Now I'm too sick to work, volunteer, enjoy hobbies, socialize, or leave the house other than for medical appointments. Basic day to day survival is a constant struggle that takes up all of my capacity.

How did I end up with craniocervical instability?

I was born with increased risk due to a genetic connective tissue disorder called hypermobile Ehlers-Danlos syndrome. A childhood concussion and then a whiplash injury in my 20s likely damaged the ligaments in my neck, but my symptoms were manageable and I was still active and functional until my early 30s when my health began to decline while living in a water damaged apartment. Years of inhaling mold spores and mycotoxins triggered an inflammatory immune condition called mast cell activation syndrome that further degraded my connective tissue (while also causing multi-system symptoms throughout my body). The final straw was a likely Covid infection in March 2020 that my doctor described as "a bomb going off" in my body. My existing symptoms and conditions worsened dramatically, with new neurocognitive and immune issues in addition.

At this point I lost the ability to push through and I could no longer work, even part-time from home. I tried to teach a once a week film class on Zoom, but I ended up unable to think, speak, or see clearly by the end of each class, with debilitating neurocognitive symptoms lasting for days afterwards. Five years later, seemingly simple physical or cognitive activities like a short walk, a shower, prepping food, riding in a car, talking on the phone, answering emails, or writing this GoFundMe text, still leave me severely incapacitated for days afterwards. Trying to stack multiple seemingly simple activities like these over consecutive days leaves me extremely unwell for weeks to months, and has caused disease progression over time. I've been mostly housebound and bed tethered since 2020 and I generally only leave the house for medical appointments. I struggle to be upright or to take care of basic day to day tasks.

In 2024 I was reinfected with Covid and my craniocervical instability worsened. Where I used to get temporary but significant benefit from X-ray guided manual upper cervical adjustments, since 2024 I haven't been able to hold adjustments for more than a few hours at a time. It became very clear to both me and my doctors that I needed to get stability back to my upper spine to stabilize my health and hopefully improve my baseline.

What is a PICL procedure?

After exhausting conservative treatment options for craniocervical instability, including physical therapy and upper cervical adjustments, in the summer of 2025 I was fortunate to be able to travel to Colorado for my first PICL procedure. The PICL involves extracting bone marrow from the hip bones, processing it into a high dose stem cell concentrate, and then injecting that through the back of the throat into the ligaments of the craniocervical junction while under anesthesia. Over time, the procedure helps heal connective tissue damage and tighten up ligaments to reduce excess vertebrae movement and compressions. The PICL is an exciting treatment because it can bring patients from severe disability and suffering back to working and living their lives without the terrible risks and lifelong side effects of a cervical spinal fusion.

My first PICL procedure went well. My fragile body handled it better than expected, and I've already noticed small but significant positive changes, indicating I'm on the right treatment path. However, most patients need two to four PICL treatments to see major benefit--and potentially more for patients with connective tissue disorders--so I'm reaching out to my community to help me raise money for a second round. My doctors and I hope and expect that several rounds of PICL will improve many of my issues, including dysautonomia (inability to regulate the body's automatic processes including blood pressure, heart rate, sleep, and digestion), severe insomnia, cerebral blood flow issues, cognitive dysfunction, head and neck pain and pressure, difficulty being upright, trouble swallowing, and hand weakness and numbness.

So...will this "fix" me? And what does craniocervical instability have to do with my other diagnoses?

When I was finally able to access a knowledgeable specialist in 2021, I was diagnosed with a whole set of complex chronic illnesses, including hypermobile Ehlers-Danlos syndrome, myalgic encephalomyelitis, long Covid, mast cell activation syndrome, dysautonomia, craniocervical instability, multiple chronic infections, leukopenia/neutropenia, and other immune dysfunction. Each of these diagnoses can be debilitating on its own, but they’re very commonly comorbid, and the relationships between them are complex and fascinating.

A few patients with a similar diagnostic picture to mine have gone into complete remission from treating their craniocervical instability. Other patients experience symptom and severity improvements, but their comorbid conditions keep them chronically ill and disabled. So while it’s possible PICL treatments could put me into remission and allow me to work full-time again, I would view this as unlikely. What's more likely, & what my doctors and I are hoping for and expecting, is less suffering, more stability, and more capacity to safely take care of myself with some room left over for things that would bring meaning, joy, and connection back to my life.

(To the loved ones who have heard me talk about myalgic encephalomyelitis more than my other diagnoses, that’s because it’s one of the most severely debilitating diseases ever studied, it's quite common (especially among young and middle aged women), and yet it's the most neglected of my conditions with no FDA-approved treatments and extremely poor knowledge among medical providers. It now affects around half of patients with long Covid, so numbers have increased dramatically since 2020 and continue to grow as Covid continues to spread. It's been important to me to focus my limited capacity for advocacy on this growing global health and human rights crisis).

Thank you for your support!

My family and I truly appreciate any and all donations and shares of this GoFundMe. Losing my health has been a devastating, harrowing, and isolating experience. Beyond the financial assistance that will allow me to access a treatment I'm very hopeful about, your support also helps me feel less alone. Donating and/or sharing this GoFundMe page are treasured gifts of care and support that I don't take for granted.