A Lasting Legacy

We remember those we have lost, including Christopher Dewey, Lisa Patel Waller, and John Janiak, whose courageous journeys with mucosal melanoma inspired the vision for the RARE Registry.

Patients with rare diseases often feel alone as there are few others who understand their experience, and this challenging reality is compounded by the scarcity of effective treatments. These patients and their spouses — Julie Dewey, Alfonso Waller, and Patricia Janiak — refused to accept that future patients diagnosed with a rare melanoma should have to endure the same uncertainties.

Finding each other through the Mucosal Melanoma Warriors support community, these individuals discovered that their experiences reflected those of countless others navigating this rare disease. Together, they envisioned a way for patients and caregivers to transform their experiences into knowledge that could accelerate research and improve care — the RARE Registry, the first direct-to-patient registry dedicated to rare melanoma subtypes including mucosal and acral melanoma.

We also honor the life of Jonathan Swingle, a dedicated and fearless patient advocate for mucosal melanoma. As a founding patient advisor of the RARE Registry Oversight Committee, Jonathan helped shape the registry’s patient-centered mission — ensuring the lived experiences and disease journeys of individuals with rare melanomas could be used for impactful research studies centered on the risk factors, biomarkers, standard of care, and quality of life in the setting of rare melanomas.

The legacy of Jonathan, Christopher, Lisa, and John will live on through the RARE Registry they and their spouses helped to build and nurture — a testament to their vision that continues to connect patients, inspire hope, and fuel discoveries that will impact the future of rare melanomas.