Jodi Ettenberg, the founder of Legal Nomads and a prominent advocate for patients with spontaneous intracranial hypotension (SIH), has released a comprehensive retrospective detailing her professional and advocacy milestones throughout 2025. Despite facing a significant health setback following a physical injury in late 2024, Ettenberg reported substantial progress in medical research contributions, the expansion of her celiac disease resource business, and her transition into a primary leadership role within the Spinal CSF Leak Foundation. Her year-end report serves as a case study in "supine entrepreneurship," demonstrating how digital infrastructure and community support can facilitate high-level professional output for individuals living with severe physical limitations.
The Evolution of Legal Nomads: From Law to Advocacy
The trajectory of Ettenberg’s career provides essential context for her 2025 achievements. Formerly a corporate attorney, Ettenberg left the legal profession in 2008 to document her global travels. Over the subsequent decade, Legal Nomads evolved from a personal blog into a multifaceted business focused on food tourism, storytelling, and resources for travelers with celiac disease. However, the nature of her work changed fundamentally in 2017 after a medical procedure resulted in a spinal cerebrospinal fluid (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 fluid volume and pressure around the brain, a condition known as intracranial hypotension. The hallmark symptom is a debilitating "positional headache," which improves when lying down but becomes excruciating when upright. For Ettenberg, this condition has resulted in a "teeny tiny sliver" of her former physical mobility, necessitating that the vast majority of her work be conducted from a prone position.
Chronology of 2025: A Year of Recovery and Resilience
The beginning of 2025 was marked by a severe setback. On December 25, 2024, Ettenberg suffered a slip in the shower that exacerbated her existing leak, reducing her "uptime"—the amount of time she can remain upright before neurological symptoms become unbearable—to near zero. The first quarter of the year was dedicated to physical stabilization, yet this period of forced immobility preceded a year of intense professional activity.
Throughout the spring and summer of 2025, Ettenberg balanced the management of her aging parents’ hospitalizations with her escalating responsibilities at the Spinal CSF Leak Foundation. By mid-year, she had assumed the role of Board President, overseeing a complex organizational transition. The latter half of the year focused on the release of new digital products and the publication of a co-authored medical research paper, culminating in a successful year-end fundraising drive for leak awareness.
Leadership at the Spinal CSF Leak Foundation
One of the most significant developments of 2025 was Ettenberg’s appointment as Board President of the Spinal CSF Leak Foundation, a 501(c)(3) non-profit organization. Having volunteered with the organization since 2021, her elevation to the presidency coincided with a critical period of growth for the foundation.
Ettenberg spearheaded a national search for a new Executive Director, a process that attracted over 130 applicants. Working with pro bono employment counsel, she designed and implemented a standardized scoring and interview process. This leadership role required the integration of her legal background with her patient-advocacy experience. Under her guidance, the foundation also:
- Launched the first international patient registry for spinal CSF leak.
- Organized the annual "Leak Week" awareness campaign, which raised $4,217 through community donations.
- Coordinated the annual medical conference for specialists in the field.
Contributions to Medical Literature and Public Speaking
In a rare instance of a patient contributing directly to clinical standards, Ettenberg co-authored a research paper published in the American Journal of Neuroradiology (AJNR). The study, titled "Enhancing Clarity in Dynamic Myelography Reporting," proposed a new standardized system called SIH-RADS. This system aims to improve the accuracy and clarity of reports generated during dynamic CT myelography, a specialized imaging test used to locate elusive spinal leaks.
The study found that both patients and referring physicians preferred the SIH-RADS system over traditional reporting methods. By standardizing the language used to describe dural defects, the research seeks to reduce misdiagnosis and streamline the path to surgical or interventional treatment.
Furthering her impact on the medical community, Ettenberg participated in a "fireside chat" at a major medical conference alongside 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 metrics and patient-reported outcomes. This appearance was notable for being one of the few times Ettenberg presented while standing, a feat that required careful management of her limited "uptime" reserves.
Expansion of Celiac Disease Resources and Digital Business
While her advocacy work took center stage, Ettenberg continued to grow the commercial side of Legal Nomads. Her business provides critical safety tools for travelers with celiac disease, an autoimmune disorder where the ingestion of gluten leads to damage in the small intestine.
In 2025, Ettenberg reached a significant milestone by selling her 25,000th celiac translation card. These cards are professionally translated documents that allow travelers to communicate their dietary requirements to restaurant staff in foreign languages. The year saw the addition of three new languages—Korean, Khmer, and Croatian—bringing the total offerings to 21 languages.
Additionally, she published two comprehensive "Essential Gluten-Free Guides" for Cambodia and South Korea. These guides, which average 3,000 to 5,000 words, provide detailed analysis of local cuisines, identifying naturally safe dishes and high-risk hidden sources of gluten. This data-driven approach to food safety has made Legal Nomads a primary resource for the international celiac community.
Community Engagement and "Curious About Everything"
Ettenberg’s 2025 report also highlighted the success of her subscription-based models. Her "Curious About Everything" (CAE) newsletter reached its 57th edition in December 2025. The newsletter, which curates long-form journalism, scientific discoveries, and art, serves as the primary touchpoint for her readership.
Her Patreon community, structured as a "Support Only" model, allows followers to fund her work at various tiers. This revenue stream is particularly vital as Ettenberg noted she is ineligible for disability benefits in Canada, her country of residence. The Patreon serves as a repository for her more personal or experimental writing, covering topics such as the philosophy of chronic pain, the history of specific bird species, and retrospectives on her 2015 Vipassana meditation retreat.
Broader Implications: The Rise of the Patient-Expert
The achievements outlined in Ettenberg’s 2025 retrospective signal a broader trend in the healthcare landscape: the rise of the patient-expert. In rare disease communities, patients are increasingly moving beyond the role of passive care-receivers to become active participants in research, policy-making, and medical education.
Ettenberg’s ability to leverage a legal background to navigate non-profit governance and medical publishing suggests that the "disparate lives" of chronic pain patients can be integrated into a meaningful professional identity. Her work provides a template for how digital platforms can be used to bypass physical barriers, allowing individuals with "teeny tiny" physical lives to exert "infinite" digital influence.
Future Outlook for 2026
Looking ahead to 2026, Ettenberg intends to transition more day-to-day administrative duties at the Spinal CSF Leak Foundation to the newly hired Executive Director, allowing her to refocus on the creative and commercial aspects of Legal Nomads. Planned projects include the release of additional gluten-free country guides and the development of new celiac translation cards.
Despite the ongoing challenges of living with a CSF leak—measured in "standing increments" rather than billable hours—Ettenberg’s 2025 summary reflects a year of high-impact productivity. Her journey remains a significant point of reference for both the legal community looking for alternative career paths and the millions of individuals globally navigating life with chronic, "invisible" disabilities.
