Jazz Sethi x eChai at TiECon: The Power of Lived Experiences and Community

I had the chance to host this fireside chat with Jazz Sethi, Founder of the Diabesties Foundation, as part of TiECon Ahmedabad 2025.

This conversation wasn’t just about diabetes — it was about how lived experience can shape a movement. Jazz shared the deeply personal story behind starting Diabesties after being diagnosed with Type 1 Diabetes at 13, and how that journey of loneliness, resilience, and creativity turned into a purpose-led, community-first foundation.

We spoke about building with empathy, scaling with structure, fundraising through emotional resonance, and leading with authenticity. Jazz’s belief in “designing with the user, not for the user” — and her focus on measurable outcomes backed by storytelling — makes this a compelling blueprint for any founder building for impact.

More than just inspiration, this session was full of practical lessons on blending purpose with operational clarity.

Key notes from our conversation:

The Genesis of the Diabesties Foundation

Jazz Sethi shared a very personal "origin story." She was diagnosed with Type 1 Diabetes at the age of 13, which she described as a "life-shattering diagnosis" that required daily insulin injections and a significant adjustment to a "new normal." Beyond the physical challenges, she experienced an overwhelming sense of loneliness — stemming from not having people who understood her invisible struggles. This feeling was particularly intense during a severe hypoglycemic episode while she was in Italy for a performance diploma course.

This experience fueled her desire to create something different from the dry, medical information available online. She wanted to build engaging content, a safe space, and a supportive community for people with diabetes — especially young individuals. In 2018, the Diabesties Foundation began with a small meetup that Sethi initiated by personally reaching out to patients (perhaps unethically, but with good intentions). Expecting just five attendees, she was surprised when 25 people showed up — highlighting a significant “gap in the healthcare system” and in society at large.

The Foundational Role of Lived Experience

A core theme throughout the conversation was the importance of lived experience in community-building. For Sethi, living with Type 1 Diabetes provides constant insight into the condition’s unique struggles. This personal understanding drives her approach to “design with the user, not for the user” — a principle she learned from her mother, a designer. In her words, the user is not just a consumer, but someone living with a daily challenge. This user-centric lens is central to how the Diabesties Foundation designs programs, builds communities, and forms partnerships.

Sethi emphasized that this “why,” rooted in lived experience, is what she always returns to when building something new or navigating uncertainty.

Sustaining and Scaling a Purpose-Driven Organization

The conversation also addressed the “business aspect” of running a non-profit. Sethi clarified that while their culture is like a family, they operate “like a corporate.” Early on, she realized that relying only on volunteers wasn’t sustainable. The foundation made a conscious decision to pay employees well, acknowledging that social work doesn’t negate the need for financial stability.

They’ve built strong business fundamentals — structure, teams, SOPs, regular meetings, a board of directors, and external advice from mentors across diverse fields including finance and design. As Sethi put it, “having strong business fundamentals is actually what helps you scale a mission-driven organization.”

Fundraising and Partnership Strategies

Sethi shared a deeply personal and effective approach to fundraising — appealing to people with lived experience of diabetes. Her first major donor was someone with Type 2 Diabetes, and her pitch focused on the shared emotional and physical toll of hypo- and hyperglycemia, especially for a child without resources.

For CSR partnerships, even with companies not directly aligned with diabetes, the foundation aligns its work with broader Sustainable Development Goals (SDGs), particularly reduced inequalities and good health. Fundraising is essential, and Sethi treats every opportunity — including this fireside — as a pitch to support a significantly underserved community.

Community Building through Listening and Impact

Sethi emphasized that genuine community-building means actively listening and co-creating with the community. She highlighted the importance of not being overly attached to ideas and being open to pivoting based on feedback. The Diabesties Foundation places a strong focus on outcomes — from measurable clinical metrics like HbA1c reductions to improvements in mental health, school attendance, and a sense of belonging.

Documenting these outcomes and sharing stories of evolution keeps the community engaged and attracts new contributors — whether time, money, or resources. Internally, they also focus on nurturing a “congenial culture” where trust, openness, and mutual support are central.

Embracing Growth and Tackling Challenges

Scaling the foundation comes with its own set of challenges — especially reaching rural India, which often requires slower-moving government partnerships. In 2018, the concept of support groups for chronic illness was still novel and often misunderstood. Now, Sethi sees growing momentum in the patient advocacy movement.

To encourage openness, the foundation nurtures “Type One Champions” and “Type One Ambassadors” who authentically share their journeys. Sethi’s advice to fellow founders: show up with authenticity, speak your truth, and lead by example. Over time, she’s also learned to delegate, trust her team, and say no — essential skills to avoid burnout and ensure sustainability.

Measuring Impact with Metrics and Stories

The Diabesties Foundation is highly data-driven. They track key metrics like HbA1c levels for supported children and quantify the impact of educational resources. But they also recognize the power of stories — the personal, emotional journeys that numbers can’t capture alone. Together, metrics and stories paint a powerful picture of real change.

Tackling Misconceptions and Sharing Guidance

Sethi addressed several myths around diabetes, such as the misconception that it’s contagious or that insulin can be replaced by alternative treatments. Her guidance for parents of newly diagnosed children: accept the diagnosis and actively seek a community. In India, navigating the healthcare system often requires much more than a 15-minute doctor’s visit.

Vision for the Future and Systemic Collaboration

While the focus remains on Type 1 Diabetes for now, Sethi dreams of replicating this support model for all chronic conditions. Her 2040 vision? A diabetes clinic in every district of India, offering access, education, and support. But that level of impact requires many hands, deep collaboration, and government participation.

Building Meaningful Partnerships

Sethi believes successful partnerships are built on shared purpose. From the outset, roles should be clearly defined, and credit must be shared generously. For her, it’s not about the Diabesties Foundation getting recognition — it’s about impact.