We are honored to speak with Amy Cohen, who made history as the first person with sickle cell disease to run and finish the New York City Marathon. She opens up about her diagnosis, and the pivotal moment in high school when the reality of the disease set in, emphasizing the necessity of pushing through fear and living boldly against external limitations.
Amy frames her marathon finish not as a solitary victory, but as a win for the entire sickle cell community, offering a new narrative of possibility. It also connects to her professional mission as a patient advocate and founder of The Patient Room consultancy, which focuses on bridging the critical trust and information gap between pharmaceutical developers and the patients they serve.
Key Takeaways:
- Learn the three mindset shifts essential for thriving with a chronic illness, moving from limitation to possibility.
- Understand the critical importance of a supportive care team and community in achieving ambitious health goals.
- Discover why policy changes, like cuts to ACA subsidies, directly threaten care access and worsen outcomes for patients even as new therapies emerge.
This is a compelling call to action for protecting the systems that enable precision medicine, and allow all patients to pursue their own finish lines.
