Marathons, milestones and moments: How Sickle Cell Advocate, Amy Cohen, refuses to quit when it comes to her community commitment

Amy Cohen made history as the first person with sickle cell disease to complete a marathon. Diagnosed at birth due to mandatory newborn screenings in New York, she led a relatively normal childhood. Her motivation to run a marathon was inspired by watching Oprah Winfrey and was later reignited by New York's running culture.Amy's advocacy for the sickle cell community is driven by her personal experiences and the challenges faced by others with the disease. She highlights the importance of sharing information, as many patients are unaware of treatment advancements. Amy also started her own consultancy, The Patient Room, to focus on patient and community engagement, aiming to bridge the gap between patients and the pharmaceutical industry.Her work emphasises the need for collaboration and trust building, advocating for better access to information and resources. Amy's dedication to her community and her efforts to improve sickle cell care through legislative advocacy in Massachusetts demonstrate her commitment to making a difference. She remains motivated by influential figures and the support of her community.