Capturing Insights: FCS Community Advisory with Ionis

On August 16th, I had the privilege of partnering with Ionis Pharmaceuticals in Charlotte, North Carolina, to visually capture conversations during their FCS Community Insights Advisory Board. The event brought together patients living with familial chylomicronemia syndrome (FCS)—a rare genetic condition that affects about 1 in a million people—to share their experiences, challenges, and hopes for the future.

Hosted at the Hilton Charlotte Uptown, the advisory board centered around open dialogue about diagnosis journeys, treatment with TRYNGOLZA (the first FDA-approved medication for adults with FCS), and the support resources that make a difference in daily life.

As the graphic recorder for the day, my role was to actively listen and translate hours of meaningful discussion into visual summaries on large 40x60 foam boards. Each board highlighted a unique theme:

1. The FCS Patient Journey – Stories of navigating symptoms, diagnosis, and lifestyle adjustments.

2. TRYNGOLZA Treatment Journey – Insights into living with a once-monthly injection and its impact on health.

3. Ionis Every Step Support – Exploring the role of community resources and patient support programs.

4. What Does TRYNGOLZA Mean To Me? – A powerful session where participants reflected on the personal meaning of treatment and care.

The live illustrations not only documented the conversations but also created a shared visual memory for the group—something participants could see and respond to in real time.

What stood out most was the sense of resilience and community in the room. Patients generously shared stories of perseverance, the daily challenges of managing FCS, and the relief of having new treatment options available. For me, it was an honor to help translate those stories into a format that made their voices even more visible.

At Inkforma, I believe that visual storytelling transforms dialogue into connection. This Charlotte event with Ionis is a reminder of how art can amplify voices, deepen understanding, and create lasting impact in spaces where patients, innovators, and advocates come together.