Jodi Ettenberg, the former corporate lawyer turned influential travel author and patient advocate, has released a comprehensive summary of her 2025 professional and advocacy milestones, highlighting a significant year of output achieved despite the physical constraints of a debilitating chronic condition. Ettenberg, the founder of the long-running digital platform Legal Nomads, has spent the last eight years navigating life with a spontaneous spinal cerebrospinal fluid (CSF) leak, a condition that has transitioned her career from global culinary exploration to high-level medical advocacy and specialized entrepreneurship.
The 2025 report underscores a dual narrative: the continued commercial success of her celiac-focused travel resources and her ascending role within the medical community as a leader in spinal CSF leak awareness. Despite a significant health setback in late 2024—a fall that severely diminished her "uptime," or the ability to remain upright—Ettenberg managed to oversee the hiring of a new executive director for a national foundation, co-author a peer-reviewed medical paper, and expand her suite of international translation tools for travelers with autoimmune requirements.
Background: From Corporate Law to Chronic Illness Advocacy
The trajectory of Ettenberg’s career serves as a case study in accidental entrepreneurship and forced adaptation. After resigning from a legal career in 2008 to travel the world, she built Legal Nomads into a premier resource for long-term travelers, specifically those navigating Celiac disease. However, her life changed permanently in 2017 following a medical procedure that resulted in a persistent spinal CSF leak.
A spinal CSF leak occurs when a hole or tear in the dura mater—the tough membrane covering the brain and spinal cord—allows fluid to escape. This leads to a loss of intracranial pressure, causing debilitating "orthostatic" headaches that worsen when standing. For Ettenberg, this has resulted in a life measured in "standing increments," where the majority of her professional work is conducted while supine (lying flat).
By 2025, Ettenberg has integrated her legal training with her patient experience, becoming a central figure in the advocacy landscape for Spontaneous Intracranial Hypotension (SIH). Her work now bridges the gap between the patient experience and clinical research, a role that reached new heights over the past 12 months.
Leadership and Institutional Impact: The Spinal CSF Leak Foundation
One of the most significant developments in Ettenberg’s 2025 calendar was her tenure as Board President of the Spinal CSF Leak Foundation. This volunteer-led 501(c)(3) non-profit is dedicated to reducing the disability associated with spinal CSF leaks through research, education, and advocacy.
During the year, Ettenberg spearheaded a rigorous hiring process to secure a new Executive Director for the organization. This process involved managing over 130 applications, coordinating board-level interviews, and collaborating with pro bono employment counsel to navigate the legal complexities of the hire. This administrative heavy lifting was conducted alongside the planning of the foundation’s annual conference and the launch of the first international patient registry for spinal CSF leak patients.
Furthermore, Ettenberg participated in the foundation’s "LeakWeek," an annual awareness campaign. Her community-driven fundraising efforts raised $4,217 USD, placing her at the top of the campaign’s leaderboard. This funding is earmarked for medical research and the development of diagnostic standards, a field where Ettenberg has also made direct academic contributions.
Contributions to Medical Literature and Clinical Standards
In a rare achievement for a patient advocate without a medical degree, Ettenberg was a co-author on a research paper published in the American Journal of Neuroradiology (AJNR) in 2025. The paper, titled "Enhancing Clarity in Dynamic Myelography Reporting," proposed a new standardized reporting system known as SIH-RADS.
Dynamic myelography is a specialized imaging technique used to locate elusive spinal leaks by injecting contrast dye and scanning the patient in real-time. The SIH-RADS system aims to provide a uniform language for radiologists to report findings, which physicians and patients alike have reported as more effective than traditional, non-standardized reporting. Ettenberg’s involvement as a patient author provided a crucial perspective on how diagnostic clarity affects patient outcomes and psychological well-being.
In addition to her research contributions, Ettenberg was a featured speaker at a major medical conference, participating in a "fireside chat" with Dr. Andrew Callen, a neuroradiologist from the University of Colorado. The discussion focused on the barriers to care for SIH patients and the disconnect between clinical protocols and patient realities.
Business Expansion: Celiac Translation Cards and Global Guides
Parallel to her advocacy work, Ettenberg has maintained and expanded her commercial enterprise, which remains a vital resource for the global Celiac community. Celiac disease is an autoimmune condition where the ingestion of gluten leads to damage in the small intestine; for travelers, navigating foreign kitchens safely is a matter of medical necessity.
In 2025, Ettenberg reached the milestone of selling her 25,000th celiac translation card. These cards are professionally translated, country-specific documents that explain the medical requirements of a gluten-free diet to restaurant staff. The year saw the addition of three new languages: Croatian, Korean, and Khmer, bringing the total to 21 languages.
Ettenberg also published two new comprehensive "Essential Gluten-Free Guides" for Cambodia and South Korea. These guides, which typically range between 3,000 and 5,000 words, provide exhaustive data on safe local dishes, cross-contamination risks in street food, and vetted restaurant recommendations. By collaborating with readers on the ground to verify data, Ettenberg has ensured that her digital assets remain current despite her inability to travel personally.
Content Strategy and Community Engagement
The evolution of Legal Nomads has seen a shift toward more intimate, subscription-based content. Ettenberg’s "Curious About Everything" (CAE) newsletter reached its 57th issue in December 2025. The newsletter, which began as a curation of long-form journalism for fellow lawyers, has evolved into a broader exploration of science, history, and human resilience.
To support her work in the absence of government disability assistance, Ettenberg utilizes a Patreon membership model. Unlike traditional models with tiered "deliverables," she employs a "Support Only" structure. This allows her to contribute writing and updates as her fluctuating pain levels permit, without the pressure of fixed deadlines. In 2025, her Patreon content focused on the intersection of legal logic and chronic illness, as well as retrospectives on her past travels, such as a ten-year reflection on her Vipassana meditation retreat.
Ettenberg’s continued influence in the legal sector was also highlighted by her appearance on The Hearing, a global legal podcast by Thomson Reuters. The 53-minute episode explored her transition from law to advocacy and offered strategic advice to legal professionals seeking non-traditional career paths.
Data and Implications: The Economics of Chronic Illness
Ettenberg’s 2025 report provides a granular look at the economic and physical reality of living with a "hidden" disability. Her concept of "uptime"—measuring productivity in the seconds and minutes one can remain upright—serves as a poignant metric for disability in the digital age.
Data from the Spinal CSF Leak Foundation suggests that SIH is frequently misdiagnosed, often as migraine or tension headache, leading to years of unnecessary suffering. Ettenberg’s work in 2025 has directly addressed this through:
- Standardization: Pushing for the SIH-RADS reporting system to reduce diagnostic errors.
- Awareness: Utilizing her platform to educate both the public and medical professionals.
- Community Support: Raising funds that facilitate the search for a permanent cure for all patients.
The broader implication of Ettenberg’s year is the demonstration of "cognitive findability." Despite a neurological condition that limits her physical movement, she has utilized technology and community support to maintain a high-level professional output. This integration of her "three lives"—lawyer, traveler, and advocate—underscores a resilient business model that prioritizes intellectual contribution over physical presence.
Future Outlook for 2026
As Ettenberg moves into 2026, her focus is expected to shift slightly back toward her own business operations as the new Executive Director of the Spinal CSF Leak Foundation takes on more day-to-day administrative tasks. Plans for the coming year include the development of additional gluten-free travel guides and the continued expansion of her medical translation card library.
While her physical baseline remains precarious following her late-2024 fall, the 2025 milestones suggest that Ettenberg’s influence as a bridge between the medical establishment and the patient community will only continue to grow. Her ability to operate a global business and lead a national foundation from a supine position remains a testament to the evolving nature of work and the power of digital advocacy.