Jodi Ettenberg, the founder of Legal Nomads and a former corporate lawyer, has documented a significant year of professional and advocacy-related achievements in 2025, despite the restrictive physical limitations imposed by a long-term spinal cerebrospinal fluid (CSF) leak. Her transition from a high-stakes legal career to a globally recognized travel expert, and ultimately to a prominent patient advocate, underscores a broader trend in the integration of patient perspectives within medical research and non-profit governance. Throughout 2025, Ettenberg’s work spanned several distinct sectors, including medical literature co-authorship, non-profit leadership, and the expansion of international resources for the celiac community.
The Chronology of a Health-Driven Career Pivot
Ettenberg’s professional trajectory underwent a fundamental shift in 2008 when she left her legal practice to travel and document her experiences through her platform, Legal Nomads. For nearly a decade, the site served as a resource for alternative legal careers, food-focused travel, and celiac-safe exploration. However, in 2017, Ettenberg sustained a spinal CSF leak following a medical procedure. A spinal CSF leak occurs when a hole or tear in the dura mater—the outermost layer of the meninges—allows cerebrospinal fluid to escape the protective sac around the brain and spinal cord. This results in Spontaneous Intracranial Hypotension (SIH), a condition characterized by debilitating "orthostatic" headaches that worsen when upright and improve when lying flat.
The year 2025 began under challenging circumstances for Ettenberg following a physical setback in December 2024. A fall in the shower significantly reduced her "uptime"—the limited duration she can remain in a vertical position before neurological symptoms become overwhelming. Consequently, much of Ettenberg’s output in 2025 was conducted from a supine position, utilizing digital tools to maintain her business operations and advocacy roles. This "granularity of living," as Ettenberg describes it, involves measuring daily activity in "standing increments" rather than billable hours, a stark contrast to her previous life in the legal sector.
Advancing Medical Standards through Patient-Led Research
One of the most significant milestones of 2025 was Ettenberg’s contribution to formal medical literature. She served as a patient co-author on a research paper published in the American Journal of Neuroradiology (AJNR). The study, 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," introduced a new reporting measure known as SIH-RADS.
Dynamic myelography is a specialized diagnostic imaging test used to locate spinal CSF leaks. It involves injecting contrast dye into the spinal canal and performing real-time CT scans as the patient’s position is adjusted. The SIH-RADS system aims to standardize how these complex findings are reported by radiologists to referring physicians and patients. Data from the study indicated that both medical providers and patients preferred the standardized SIH-RADS format over traditional narrative reporting, as it improved clarity regarding the location and nature of dural defects.
The inclusion of a patient author in such a technical paper reflects a growing movement toward "Patient-Focused Drug Development" (PFDD) and patient-centered outcomes research. By providing the patient’s perspective on how diagnostic results are communicated, Ettenberg helped bridge the gap between clinical data and patient understanding, which is often a barrier in the treatment of rare or complex neurological conditions.
Leadership and Governance at the Spinal CSF Leak Foundation
In 2025, Ettenberg’s role within the medical community expanded beyond research into executive governance. She was elected Board President of the Spinal CSF Leak Foundation, a 501(c)(3) non-profit organization dedicated to improving the lives of those affected by spinal CSF leaks. Her tenure as President was marked by a period of organizational transition, most notably the recruitment of a new Executive Director.
The hiring process, led by Ettenberg, involved managing over 130 applications. Working alongside pro bono employment counsel, Ettenberg designed a structured interview and scoring process to ensure an objective selection. This administrative overhaul was conducted alongside the planning of the foundation’s annual medical conference and "Leak Week," an international awareness campaign.
Under Ettenberg’s leadership, the foundation also worked toward launching the first international patient registry for spinal CSF leaks. Registries are critical in the study of orphan diseases (conditions affecting fewer than 200,000 people in the U.S.), as they allow researchers to aggregate data on symptoms, diagnostic hurdles, and treatment efficacy from a global pool of participants. This data-driven approach is essential for establishing standardized care protocols in a field where patients often face years of misdiagnosis.
Economic and Educational Contributions to the Celiac Community
Despite her primary focus on CSF leak advocacy, Ettenberg continued to manage and expand the celiac-related branch of her business. In 2025, she recorded the sale of her 25,000th celiac translation card. These cards are specialized tools that allow travelers with celiac disease—an autoimmune disorder where the ingestion of gluten leads to damage in the small intestine—to communicate their dietary requirements in foreign languages with high technical accuracy.
The expansion of this resource in 2025 included the addition of three new languages: Croatian, Korean, and Khmer. This brings the total number of available languages to 21. Furthermore, Ettenberg published comprehensive "Essential Gluten-Free Guides" for Cambodia and South Korea. These guides, often exceeding 3,000 words, provide detailed analysis of local ingredients, safe traditional dishes, and cross-contamination risks.
Data suggests that the market for gluten-free travel resources remains robust, as approximately 1% of the global population is estimated to have celiac disease, and many more have non-celiac gluten sensitivity. Ettenberg’s business model, which transitions from free long-form educational content to paid specialized tools, remains a case study in niche digital entrepreneurship.
Media Engagement and Public Speaking
Ettenberg’s 2025 activities also included high-profile media engagements that connected her legal background with her current advocacy work. She was a featured guest on "The Hearing," a global legal podcast produced by Thomson Reuters. The 53-minute episode explored the trajectory of her career, offering analysis on professional identity and the transferability of legal skills to the non-profit and entrepreneurial sectors.
In a rare public appearance, Ettenberg spoke at a medical conference in a "fireside chat" with Dr. Andrew Callen, a neuroradiologist from the University of Colorado. The session addressed the systemic barriers to care in the field of SIH, contrasting the physician’s clinical perspective with the patient’s lived experience. This dialogue highlighted the challenges of "invisible" disabilities and the psychological toll of chronic pain management. The session was noted by attendees for its focus on the "empathy gap" often found in the treatment of complex neurological disorders.
Broader Impact and Future Implications
The cumulative impact of Ettenberg’s 2025 activities provides a roadmap for how individuals with chronic illnesses can continue to contribute to professional and scientific fields through digital integration. From a financial perspective, her community-driven fundraising efforts raised $4,217 for the Spinal CSF Leak Foundation during Leak Week, contributing to the organization’s ability to fund further research grants.
Ettenberg’s work also highlights the importance of Patreon and similar subscription-based models in sustaining independent advocacy. By offering tiered memberships, she has created a stable revenue stream that allows her to dedicate the majority of her limited "uptime" to volunteer medical advocacy rather than traditional commercial output.
Looking toward 2026, the implications of Ettenberg’s work suggest a continued shift toward standardized medical reporting and the expansion of patient registries. As the new Executive Director of the Spinal CSF Leak Foundation takes office, Ettenberg is expected to pivot back toward her own business interests while maintaining her oversight role as Board President. Her 2025 record serves as evidence that cognitive and professional output can remain high even when physical mobility is severely restricted, provided there is a robust digital infrastructure and a supportive professional community.
In conclusion, Jodi Ettenberg’s 2025 milestones represent a successful integration of three distinct professional identities: the lawyer, the creator, and the advocate. By leveraging her legal training to navigate medical research and non-profit governance, she has significantly advanced the discourse around spinal CSF leaks and provided tangible tools for the global celiac community, all while managing a debilitating chronic condition.