Jodi Ettenberg, a former corporate attorney turned digital entrepreneur and patient advocate, has released a comprehensive year-end report detailing a significant expansion of her advocacy and business initiatives throughout 2025. Despite being largely confined to a supine position due to a chronic spinal cerebrospinal fluid (CSF) leak sustained in 2017, Ettenberg’s 2025 milestones include the co-authorship of a major medical research paper, the election to Board President of the Spinal CSF Leak Foundation, and the sale of her 25,000th celiac translation card. Her trajectory from a "lock-step" legal career to a prominent voice in the rare disease community serves as a case study in digital resilience and the evolving role of patient-experts in medical research and non-profit leadership.
Background: From Corporate Law to Global Advocacy
Ettenberg’s professional journey began in the Canadian legal sector, where she practiced corporate law before resigning in 2008 to travel globally. This transition led to the creation of Legal Nomads, a platform that evolved from a personal travel blog into a multifaceted business focusing on food culture, celiac-safe travel, and the psychology of career transitions. However, Ettenberg’s career took a dramatic turn in 2017 following a medical procedure—a lumbar puncture—that resulted in a persistent spinal CSF leak.
A spinal CSF leak is a condition where the fluid surrounding the brain and spinal cord escapes through a hole or tear in the dura mater, the outermost layer of the meninges. This results in Spontaneous Intracranial Hypotension (SIH), a debilitating condition characterized by severe "orthostatic" headaches that worsen when the patient is upright. For Ettenberg, the condition has necessitated a radical lifestyle shift, with her daily activities measured in "standing increments" or "uptime." In her 2025 retrospective, she describes her current existence as a "teeny tiny sliver" of her former life, yet one that remains "infinite" through the use of technology and community engagement.
Medical Research and Standardizing Diagnostic Reporting
One of the most significant professional achievements of 2025 for Ettenberg was her role as a patient-author in a peer-reviewed medical paper published in the American Journal of Neuroradiology (AJNR). The research, titled "Enhancing Clarity in Dynamic Myelography Reporting: Results of a Survey of Patients and Referring Providers Evaluating a Standardized Reporting System in the Myelographic Work-Up of Patients with Suspected Spontaneous Intracranial Hypotension," introduces the SIH-RADS (Spontaneous Intracranial Hypotension Reporting and Data System).
The paper addresses a critical gap in the diagnosis of spinal CSF leaks. Standard imaging often fails to locate the precise site of a leak, particularly in complex cases involving CSF-venous fistulas. Dynamic CT myelography, which involves injecting contrast dye into the spinal canal and scanning the patient in real-time as they are tilted or moved, is a primary diagnostic tool. However, the lack of standardized reporting has historically led to communication barriers between radiologists, neurologists, and patients.
Ettenberg collaborated with a team of physicians, including Dr. Andrew Callen of the University of Colorado, to develop a reporting system that improves clarity for both referring providers and patients. The SIH-RADS system was found to be preferred by a majority of survey participants, marking a pivotal step toward standardized care in a field often characterized by diagnostic delays and medical gaslighting.
Leadership at the Spinal CSF Leak Foundation
Ettenberg’s involvement with the Spinal CSF Leak Foundation reached a new peak in 2025 as she assumed the role of Board President. This position, which she accepted following several years of volunteer service starting in 2021, placed her at the helm of a 501(c)(3) non-profit during a period of organizational transition.
Key leadership milestones in 2025 included:
- Executive Director Recruitment: Ettenberg spearheaded a rigorous hiring process for a new Executive Director, managing over 130 applications. This involved the creation of a scoring matrix, coordinating board interviews, and navigating the legal complexities of employment law with pro bono counsel.
- International Patient Registry: The Foundation worked toward the launch of the first international patient registry for spinal CSF leaks, a tool designed to aggregate global data to accelerate research into the condition’s prevalence and treatment outcomes.
- Leakweek 2025: Under Ettenberg’s leadership, the annual awareness campaign "leakweek" saw increased engagement. Ettenberg herself raised $4,217 through her community, contributing to the Foundation’s research and advocacy funds.
- Medical Conferences: Ettenberg participated in a "fireside chat" with Dr. Andrew Callen at a major medical conference, representing the patient perspective on barriers to care. This session highlighted the disconnect between clinical metrics and the lived experience of patients with chronic neurological pain.
Business Expansion: Celiac Resources and Digital Media
Parallel to her non-profit work, Ettenberg continued to scale the commercial side of Legal Nomads, which remains her primary source of income. In 2025, the business reached a milestone with the sale of its 25,000th celiac translation card. These cards, designed to help travelers with celiac disease communicate strict dietary requirements in foreign languages, are now available in 21 languages, including new 2025 additions: Korean, Khmer, and Croatian.
The expansion of her "Essential Gluten-Free Guides" also continued with the publication of comprehensive resources for Cambodia and South Korea. These guides, often exceeding 5,000 words, provide a detailed analysis of safe and unsafe regional dishes, going beyond simple restaurant listings to offer cultural and linguistic context for the celiac traveler.
In the digital media space, Ettenberg maintained several recurring projects:
- Curious About Everything (CAE): Her monthly newsletter, which transitioned from a general "Links I Loved" format to a curation of science, art, and long-form journalism, reached its 57th edition in December 2025.
- Patreon Integration: Ettenberg’s Patreon membership serves as a "support-only" model, allowing her to provide content based on her fluctuating health baseline while securing the financial stability necessary to continue her volunteer work.
- Podcast Appearances: She was featured in a 53-minute episode of The Hearing, a Thomson Reuters legal podcast. The interview explored her transition from law to advocacy and offered insights for legal professionals seeking alternative career paths.
Chronology of 2025: A Year of Extremes
The 2025 calendar year was marked by significant personal and physical challenges that threatened to derail Ettenberg’s professional output.
- Q1 2025: The year began in a state of "despair" following a physical setback on Christmas Day 2024. A slip in the shower caused a significant decline in her "leak baseline," requiring months of strict bed rest and a pause on most creative projects.
- Q2-Q3 2025: During the mid-year, Ettenberg managed the care of both her father and stepmother during their respective hospitalizations. This period coincided with the peak of the Spinal CSF Leak Foundation’s executive search and the finalization of the SIH-RADS research paper.
- Q4 2025: The final quarter saw a return to public engagement, including the Thomson Reuters podcast and the publication of new travel guides, culminating in the 2025 year-end review.
Analysis of Impact and Future Implications
Ettenberg’s 2025 output reflects a broader trend in the healthcare landscape: the rise of the "Expert Patient." In rare disease communities, where specialized medical knowledge is often concentrated in a few geographic centers, patients like Ettenberg play a crucial role in bridging the gap between clinical research and community needs.
The successful implementation of the SIH-RADS system suggests that patient input is not merely a matter of empathy, but a functional necessity for improving diagnostic accuracy. Furthermore, Ettenberg’s ability to manage a 501(c)(3) and a global digital business while bed-bound underscores the transformative power of "asynchronous" work and digital connectivity for the disabled community.
As 2026 approaches, Ettenberg has indicated a desire to shift more operational responsibilities to the Foundation’s new Executive Director, allowing her to refocus on the creative and educational components of Legal Nomads. Her 2025 retrospective stands as a testament to the possibility of high-level professional contribution within the constraints of severe chronic illness, providing a blueprint for digital advocacy in the modern era.
