Jodi Ettenberg, a former corporate attorney turned digital entrepreneur and patient advocate, has concluded a landmark year in 2025, marked by significant contributions to medical literature, non-profit leadership, and the expansion of international resources for the celiac community. Operating primarily from a supine position due to a debilitating spinal cerebrospinal fluid (CSF) leak sustained in 2017, Ettenberg’s output over the past twelve months highlights a growing trend of patient-led expertise in rare disease advocacy. Her work in 2025 included the publication of a co-authored research paper in a major medical journal, the successful tenure as Board President of the Spinal CSF Leak Foundation, and the milestone sale of her 25,000th celiac translation card.
A Trajectory of Transformation: From Corporate Law to Global Advocacy
Ettenberg’s professional journey serves as a case study in accidental entrepreneurship and resilience. In 2008, she transitioned from a structured legal career to launch Legal Nomads, a platform that initially focused on world travel and culinary exploration. Over the ensuing decade, the platform evolved into a multifaceted business centered on the needs of travelers with restrictive dietary requirements, specifically those with celiac disease.
However, the trajectory of both the business and Ettenberg’s life shifted dramatically in 2017 following a medical procedure that resulted in a chronic spinal CSF leak. This condition, characterized by a hole or tear in the dura mater—the tough membrane covering the brain and spinal cord—causes internal fluid to escape, leading to a loss of intracranial pressure. The primary symptom is a debilitating orthostatic headache that intensifies when the patient is upright. For Ettenberg, this has necessitated a lifestyle measured in "standing increments," with the majority of her professional and personal activities conducted from bed.
The beginning of 2025 presented a specific challenge following a physical setback on December 25, 2024, when an accidental slip in the shower exacerbated her leak. Despite several months of near-total immobility, Ettenberg maintained a consistent output of educational and advocacy-based content, illustrating the efficacy of digital platforms in facilitating high-level professional engagement for those with chronic disabilities.
Scientific Contributions and the SIH-RADS Initiative
One of the most significant achievements of Ettenberg’s 2025 calendar was her role as a patient-author in a peer-reviewed research paper. Published in the American Journal of Neuroradiology (AJNR), the paper, titled "Enhancing Clarity in Dynamic Myelography Reporting," proposed a new standardized reporting system known as SIH-RADS (Spontaneous Intracranial Hypotension Reporting and Data System).
Dynamic myelography is a critical diagnostic tool used to locate dural defects by injecting contrast dye into the spinal canal and scanning the patient in real-time. Historically, the reporting of these results has lacked standardization, leading to potential miscommunication between radiologists and referring physicians. The SIH-RADS system aims to categorize findings to improve diagnostic accuracy and patient outcomes. According to the study’s findings, both physicians and patients expressed a preference for this standardized approach over traditional narrative reporting. This collaboration between Ettenberg and medical professionals, including neuroradiologist Dr. Andrew Callen, underscores the increasing integration of patient perspectives into clinical research.
Leadership at the Spinal CSF Leak Foundation
Ettenberg’s 2025 tenure as Board President of the Spinal CSF Leak Foundation represented a period of organizational transition and growth. Having joined as a volunteer in 2021, her elevation to the presidency required her to apply her legal background to non-profit governance.
A primary focus of the year was the recruitment and hiring of a new Executive Director. This process involved managing over 130 applications, coordinating a multi-stage interview and scoring process, and working with pro bono employment counsel to navigate the legal complexities of the hire. Under her leadership, the Foundation also:
- Launched the first international patient registry for spinal CSF leak, a critical tool for future epidemiological research.
- Organized "LeakWeek," an annual awareness campaign that, in June 2025, raised $4,217 through community-led fundraising efforts.
- Coordinated an annual medical conference featuring leading experts in the field.
Ettenberg also participated directly in the clinical education space, engaging in a "fireside chat" with Dr. Andrew Callen at a major medical conference. The session addressed the barriers to care from both the patient and provider perspectives, providing a rare platform for a patient to address the medical community while standing—a feat made possible by the strict management of her "uptime" baseline.
Global Celiac Resources and Business Milestones
Parallel to her advocacy in the neurological space, Ettenberg continued to expand her resources for the celiac community. Celiac disease, an autoimmune disorder where the ingestion of gluten leads to damage in the small intestine, affects approximately 1% of the global population. For these individuals, safe travel requires precise communication with food preparers.
In 2025, Ettenberg reached the milestone of 25,000 celiac translation cards sold. These cards, which are professionally translated and vetted by native speakers and medical professionals, are designed to explain the nuances of cross-contamination and hidden gluten sources. This year, the suite of resources expanded to include three new languages: Croatian, Korean, and Khmer.
Additionally, Ettenberg published two comprehensive "Essential Gluten-Free Guides" for Cambodia and South Korea. These guides, typically ranging from 3,000 to 5,000 words, provide detailed analysis of safe and unsafe regional dishes, restaurant recommendations, and cultural context regarding dietary restrictions. These resources are provided free of charge, supported by a Patreon-based membership model.
Media Presence and Digital Community Engagement
Ettenberg’s influence extended into the legal and professional sectors through a featured appearance on The Hearing, a podcast produced by Thomson Reuters. The 53-minute episode explored her transition from law to advocacy and offered insights for legal professionals seeking alternative career paths. The podcast highlighted how the "legal brain"—characterized by analytical rigor and risk assessment—can be effectively redeployed in the non-profit and creator economies.
Her monthly newsletter, Curious About Everything (CAE), reached its 57th edition in December 2025. The newsletter, which serves as a curation of long-form journalism, scientific discoveries, and art, maintains a loyal readership that transitioned with her from her early travel blogging days. The continued success of CAE and her Patreon community—which offers a "Support Only" model—demonstrates a sustainable approach to independent publishing for creators with fluctuating health capacities.
Analysis of Impact and Future Implications
The work of Jodi Ettenberg in 2025 provides a blueprint for "patient-expert" involvement in the medical and social sectors. Her ability to synthesize complex legal, medical, and culinary data has created a unique niche that serves both the rare disease and autoimmune communities.
From a journalistic perspective, the implications of her work are threefold:
- Standardization of Rare Disease Care: The introduction of SIH-RADS suggests that patient input is no longer just a qualitative "extra" but a quantitative necessity in improving diagnostic tools.
- The Evolution of the Creator Economy: Ettenberg’s shift from a travel-based business model to a research-and-advocacy model shows how digital creators can maintain relevance and revenue even when their physical circumstances change.
- Non-Profit Professionalization: The rigorous hiring process and the launch of a patient registry at the Spinal CSF Leak Foundation under Ettenberg’s presidency point toward a more data-driven and legally sound approach to small-scale medical non-profits.
As 2026 approaches, Ettenberg has indicated a desire to transition some executive duties to the Foundation’s new Executive Director while remaining in a leadership role. This shift is intended to allow more bandwidth for the development of additional celiac guides and the continuation of her writing. Her 2025 achievements remain a testament to the possibility of high-level cognitive and professional contribution in the face of significant physical limitations, proving that the "teeny tiny sliver" of a physical life can still produce an expansive global impact.
