‘I have tried to capture the relentless energy and chaos of time’s passage—the beauty that emerges from the struggle. While the path forward is guided by strategy and science, it is, for me, still profoundly emotional. In the face of such uncertainty, hope is essential. But hope alone is not enough—hope needs a plan. That’s why we founded the Foundation to Overcome Rare Genetic Errors (FORGE). I believe patient advocacy groups are crucial to the future, fostering connections between patients, families, researchers, and the industry in a unified, collaborative force’.
Inexpressible suffering but indistinguishable hope
This is Jonathan’s submission to ‘More than you can imagine: an anthology of rare experiences‘, created for Rare Disease Day 2025.
