Jodi Ettenberg, the former corporate lawyer turned influential travel author and founder of Legal Nomads, has released a comprehensive summary of her 2025 activities, documenting a year defined by high-level medical advocacy and business resilience despite severe physical limitations. Since sustaining a debilitating spinal cerebrospinal fluid (CSF) leak in 2017, Ettenberg has transitioned from a life of global exploration to one of bedbound leadership. Her 2025 retrospective highlights a significant shift in her career trajectory, moving from "accidental entrepreneurship" in the travel sector to a pivotal role in medical research and non-profit governance.
The Physical Constraints of Spontaneous Intracranial Hypotension
To understand the scope of Ettenberg’s 2025 achievements, it is necessary to examine the medical context of her condition. A spinal CSF leak occurs when the dura mater—the tough membrane holding fluid around the brain and spine—is holed or torn. This leads to Spontaneous Intracranial Hypotension (SIH), a condition where the brain loses its buoyant cushion, causing it to "sag" within the skull when the patient is upright.
Ettenberg’s 2025 began with a significant medical setback. On December 25, 2024, a fall in a shower resulted in a reopening or worsening of her leak, effectively resetting her "uptime" baseline—the amount of time she can remain upright before neurological symptoms become unbearable—to near zero. For the majority of the year, Ettenberg’s life was measured in "standing increments," necessitating that nearly all professional output be produced from a supine position. This physical constriction stands in stark contrast to her decade-long career as a travel writer, during which she documented culinary and cultural experiences across dozens of countries.
Leadership and Governance: The Spinal CSF Leak Foundation
Despite her physical confinement, 2025 marked Ettenberg’s most significant year in organizational leadership. After joining the Spinal CSF Leak Foundation as a volunteer in 2021, she was elected Board President in 2025. The Foundation, a 501(c)(3) non-profit, is the primary organization dedicated to reducing the suffering of persons affected by intracranial hypotension or spinal CSF leaks.
Under Ettenberg’s presidency, the Foundation underwent a period of structural professionalization. Most notably, she spearheaded the recruitment and hiring process for a new Executive Director. This process involved:
- The review of over 130 applications from diverse professional backgrounds.
- The implementation of a standardized scoring and interview rubric to ensure objective selection.
- Collaboration with pro bono employment counsel to navigate the legal complexities of non-profit hiring.
In addition to personnel management, Ettenberg’s tenure in 2025 included the planning of the Foundation’s annual medical conference, the launch of the first international patient registry for spinal CSF leaks, and the oversight of "Leak Week," a global awareness campaign. These efforts have been instrumental in moving the condition from a "rare disease" classification toward a more recognized "underdiagnosed" status within the neurological community.
Contributions to Medical Research and Literature
A landmark achievement for Ettenberg in 2025 was her transition from patient to co-author in peer-reviewed medical literature. She collaborated with a team of neuroradiologists and clinicians to publish a paper in the American Journal of Neuroradiology (AJNR) titled "Enhancing Clarity in Dynamic Myelography Reporting."
The paper proposes a new standardized reporting measure known as SIH-RADS. In the diagnostic work-up of spinal CSF leaks, dynamic CT myelography is a critical tool that involves injecting contrast dye into the spinal canal and scanning the patient in real-time to visualize fluid escape. Historically, the reporting of these findings lacked standardization, leading to potential miscommunication between radiologists and surgeons.
Ettenberg served as the patient-author, ensuring that the SIH-RADS system improved clarity for the patients themselves while remaining a preferred tool for referring providers. This contribution represents a growing trend in medicine where "patient-experts" are integrated into the research process to improve clinical outcomes and patient literacy.
Business Evolution: Celiac Advocacy and Digital Content
While her non-profit work expanded, Ettenberg continued to manage her original business, Legal Nomads, which has evolved to serve the needs of the chronic illness and celiac communities. In 2025, the business reached several quantitative milestones:
Celiac Translation Cards
Ettenberg’s celiac translation cards, which provide detailed, medically accurate explanations of gluten-free requirements for use in foreign restaurants, sold their 25,000th unit in 2025. Originally launched in 2015, the project now encompasses 21 languages. In the past year, Ettenberg added three new languages—Croatian, Korean, and Khmer—to the catalog. These cards are increasingly utilized not only by individual travelers but also by physicians and travel agencies as a standard safety tool for gluten-sensitive patients.
Global Gluten-Free Guides
The 2025 calendar year saw the publication of two comprehensive "Essential Gluten-Free Guides" for Cambodia and South Korea. These guides, often exceeding 5,000 words, provide a granular analysis of local cuisines, identifying safe street foods and cross-contamination risks. Because Ettenberg can no longer travel to verify these locations personally, she has developed a collaborative model, working with trusted readers and local residents to ensure data accuracy.
The "Curious About Everything" Newsletter
The transition from travel blogging to a broader intellectual focus is best exemplified by her newsletter, Curious About Everything (CAE). By December 2025, the newsletter reached its 57th edition. The publication serves as a curated digest of long-form journalism, art, and science. Maintaining a monthly schedule for a free publication requires significant cognitive effort, which Ettenberg notes is one of the few ways she maintains a sense of "infinite" life despite a "tiny" physical existence.
Public Speaking and Media Engagement
Ettenberg’s 2025 professional activities also included high-profile public engagements. She participated in a "fireside chat" at a major medical conference alongside Dr. Andrew Callen, a prominent neuroradiologist from the University of Colorado. The discussion focused on the barriers to care for spinal CSF leak patients, contrasting the clinical perspective with the lived experience of the patient.
Furthermore, Ettenberg was featured on The Hearing, a global legal podcast produced by Thomson Reuters. The 53-minute episode explored her trajectory from the legal profession to her current role as a health advocate. The interview highlighted the transferability of legal skills—such as analytical rigor, advocacy, and risk assessment—to the management of a chronic health crisis and non-profit governance.
Financial Impact and Community Support
Community-led fundraising remained a cornerstone of Ettenberg’s 2025 impact. During the annual "Leak Week" awareness event in June, her community raised $4,217 USD for the Spinal CSF Leak Foundation. This funding is directed toward research grants and patient education initiatives.
Ettenberg also utilized the Patreon platform to sustain her creative work. In a year where she was ineligible for disability benefits in Canada due to complex bureaucratic hurdles, the Patreon model allowed for a "support-only" tier system. This provided her with the financial stability to dedicate hundreds of pro bono hours to her leadership role at the Foundation while continuing to produce niche content for her most dedicated followers.
Analysis of Implications: The Patient-Expert Model
The 2025 year in review for Jodi Ettenberg serves as a case study in the "patient-expert" phenomenon. Her ability to synthesize legal expertise, digital marketing, and medical advocacy suggests a new model for how individuals with chronic illnesses can influence systemic change.
By integrating her "legal brain" with her personal health data, Ettenberg has moved beyond traditional "patient storytelling" into the realm of policy and research. The success of the SIH-RADS proposal and the professionalization of the Spinal CSF Leak Foundation under her presidency indicate that the lived experience of a patient, when combined with professional rigor, can accelerate progress in rare and underdiagnosed medical fields.
As 2025 concludes, Ettenberg’s report reflects a paradoxical reality: a year of profound physical suffering that simultaneously produced significant advancements in medical reporting, non-profit management, and global celiac safety. Her trajectory suggests that while her "traveling life" has concluded, her role as a catalyst for medical and organizational change has only solidified. Looking toward 2026, Ettenberg aims to transition more operational duties to the Foundation’s new Executive Director, allowing her to refocus on the long-term strategic growth of both the Foundation and her personal advocacy platforms.
