Jodi Ettenberg, the founder of the long-standing digital platform Legal Nomads and a prominent advocate for spinal cerebrospinal fluid (CSF) leak awareness, has released a comprehensive year-end retrospective detailing her professional and philanthropic achievements throughout 2025. Despite facing severe physical limitations resulting from a chronic spinal CSF leak sustained in 2017, Ettenberg reported a year of significant output, including the publication of medical research, a leadership transition at the Spinal CSF Leak Foundation, and the expansion of her celiac-focused travel business. Her trajectory from a high-level corporate lawyer to a world traveler and, ultimately, a patient-leader provides a case study in the integration of professional skill sets within the context of chronic disability.
The Medical Context of Spinal CSF Leaks and Spontaneous Intracranial Hypotension
To understand the scope of Ettenberg’s 2025 achievements, it is necessary to consider the debilitating nature of her underlying condition. A spinal CSF leak occurs when the dura mater—the tough membrane enveloping the brain and spinal cord—develops a hole or tear. This allows cerebrospinal fluid to escape, leading to a loss of fluid volume and pressure around the brain, a condition known as Spontaneous Intracranial Hypotension (SIH).
The primary symptom of SIH is an orthostatic headache, which worsens significantly when the patient is upright and improves when lying flat. For Ettenberg, this has resulted in a life measured in "standing increments." In late 2024, a physical accident involving a slip in the shower further compromised her baseline health, leaving her largely bedbound for the early months of 2025. This physiological constraint necessitates that her professional contributions be conducted almost entirely from a supine position, utilizing mobile technology and community collaboration to overcome physical immobility.
Leadership and Organizational Milestones at the Spinal CSF Leak Foundation
A central pillar of Ettenberg’s 2025 activity was her elevation to the role of Board President of the Spinal CSF Leak Foundation. Having volunteered with the organization since 2021, her transition to the presidency came during a period of significant organizational change. One of her primary responsibilities this year involved spearheading the search for a new Executive Director.
The hiring process was a substantial undertaking, attracting over 130 applicants. Ettenberg managed the end-to-end recruitment cycle, which included developing interview rubrics, coordinating board-level evaluations, and navigating the legal complexities of employment law with pro bono counsel. Beyond human resources, her tenure as President involved overseeing the planning of the foundation’s annual medical conference, managing "Leak Week"—a global awareness campaign—and facilitating the launch of the first international patient registry for spinal CSF leaks.
This leadership role required a synthesis of her "three lives": her legal background for governance and contracts, her entrepreneurial experience for organizational scaling, and her patient perspective for advocacy. The successful onboarding of a new Executive Director in late 2025 marks a turning point for the foundation, allowing Ettenberg to refocus on strategic oversight while ensuring the continuity of research-funding initiatives.
Contributions to Medical Literature and Standardized Reporting
In a notable departure from traditional patient advocacy, Ettenberg contributed to the formal scientific community as a co-author of a peer-reviewed research paper. Published in the American Journal of Neuroradiology (AJNR), the paper proposed a new standardized reporting system for dynamic myelography, titled SIH-RADS.
Myelography is a diagnostic imaging technique used to locate dural defects by injecting contrast dye into the spinal space. Dynamic CT myelography, specifically, allows physicians to observe the flow of contrast in real-time as the patient’s position is changed. However, the lack of standardized reporting in these tests often leads to diagnostic delays or misinterpretations.
The SIH-RADS system (Spontaneous Intracranial Hypotension Reporting and Data System) was designed to enhance clarity between neuroradiologists and referring providers. Ettenberg’s role as a patient-author provided a crucial perspective on how diagnostic results are communicated to those suffering from the condition. Initial surveys indicated that both physicians and patients preferred the SIH-RADS format over traditional narrative reporting, suggesting a potential shift in how this complex condition is documented globally.
Expansion of Celiac Disease Support and Global Travel Resources
While her advocacy work focused on neurology, Ettenberg continued to scale her original business ventures within the celiac disease community. Having been diagnosed with celiac disease during her years of world travel, she identified a market gap for high-quality, technically accurate translation cards that go beyond simple phrases to explain cross-contamination and specific local ingredients.
In 2025, Ettenberg reached the milestone of selling her 25,000th celiac translation card. The product line expanded to include three new languages: Croatian, Korean, and Khmer, bringing the total offering to 21 languages. These cards are now utilized not only by individual travelers but also by hospitals, physicians, and travel agencies.
Furthermore, Ettenberg published two new "Essential Gluten-Free Guides" for Cambodia and South Korea. These guides, ranging from 3,000 to 5,000 words, provide a deep dive into safe regional dishes, hidden sources of gluten in local cuisines, and vetted restaurant recommendations. By collaborating with readers on the ground to verify data, Ettenberg has maintained the accuracy of her resources despite her inability to travel personally. This data-driven approach to food safety has cemented her platform as a primary resource for the approximately 1% of the global population living with celiac disease.
Digital Media Strategy and Community Engagement
Ettenberg’s 2025 digital strategy focused on "Curious About Everything" (CAE), a monthly curation newsletter that evolved from her earlier "Links I Loved" series. Reaching its 57th issue in December 2025, the newsletter serves as a vehicle for her "voracious need to learn," featuring long-form journalism, scientific discoveries, and artistic spotlights.
Parallel to the free newsletter, Ettenberg utilized the Patreon platform to sustain her business operations. Given that she is ineligible for disability benefits in Canada—a common hurdle for self-employed individuals with non-traditional career paths—the Patreon membership model provides the financial stability necessary for her to dedicate significant hours to unpaid volunteer advocacy.
The membership is structured into three tiers, represented by avian mascots: Bob the bluebird, Fiona the robin, and Arthur the raven. In 2025, this private community became the primary outlet for her long-form writing on topics such as the philosophy of chronic pain, the integration of legal skills into advocacy, and retrospectives on her 2008 departure from the legal profession.
Public Speaking and Professional Recognition
A significant physical milestone occurred during the year when Ettenberg delivered a standing presentation at a medical conference. The session was a "fireside chat" with Dr. Andrew Callen, a neuroradiologist from the University of Colorado. The discussion addressed the systemic barriers to care in the spinal CSF leak field, contrasting the patient’s lived experience with the clinical challenges faced by physicians.
Ettenberg’s professional history was also highlighted in the legal sector through an interview on The Hearing, a podcast produced by Thomson Reuters. The episode, which aired in late 2024 and gained traction throughout 2025, explored her transition from corporate law to digital entrepreneurship. It provided a roadmap for legal professionals seeking alternative careers, emphasizing how the analytical rigors of law can be applied to diverse fields such as global health advocacy and specialized publishing.
Financial Impact and Community Philanthropy
The year also saw a successful philanthropic outcome through the "Leak Week" awareness campaign in June. Through her community at Legal Nomads, Ettenberg raised $4,217 USD for the Spinal CSF Leak Foundation. This contribution placed her at the top of the campaign’s leaderboard, demonstrating the high level of engagement and trust she has cultivated with her audience over 17 years of digital presence.
Analysis of Implications: The Patient-Expert Model
Ettenberg’s 2025 trajectory illustrates the rising importance of the "patient-expert" in modern healthcare and non-profit management. Her ability to operate at a high level within medical, legal, and entrepreneurial frameworks—while physically incapacitated—highlights the potential of the digital economy to provide meaningful work for the disabled.
The integration of her "three lives" suggests that the skills acquired in high-pressure professional environments (like law) are highly transferable to patient advocacy, where the ability to parse complex data and manage organizational structures is often lacking. As the Spinal CSF Leak Foundation moves into 2026 with a new Executive Director and a standardized reporting system in place, the impact of Ettenberg’s "bedbound" year will likely be felt by the patient community for years to come.
The 2025 report concludes with a commitment to maintaining her dual focus on the celiac travel community and spinal CSF leak research, provided her health baseline remains stable. Her work continues to serve as a benchmark for how individuals with chronic neurological conditions can influence global policy and medical standards from a remote, supine environment.