When your little boy is diagnosed with a progressive and fatal disease that he can’t understand, let alone pronounce, you become an advocate in a hurry. And when Erin Moore learned in 2010 that her son had cystic fibrosis, that’s exactly what happened.
Shortly after Moore’s son’s diagnosis, she discovered Emily’s Entourage — a non-profit founded by Emily Kramer-Golinkoff and her mother to help fund research for CF. Moore was inspired by Kramer-Golinkoff, who had taken her treatment, her rights as a patient and the fight for a cure into her own hands. “Every now and then, you meet someone who is an interminable force of nature,” she told the Medicine X | ED audience Saturday morning after showing a moving film on Kramer-Golinkoff’s work.
Moore’s son is now 7 years old and goes through a rigorous daily regime of medications and exercises. Moore, meanwhile, regularly speaks out on behalf of patients – and on the importance of finding a cure – on social media. She blogs at 66 Roses, and one of her tweets led to the development of a hands-free nebulizer – something that has enabled her son to do everyday kid things (like play games on his iPod) during treatment.
Moore notes on her blog that she engages in advocacy “out of necessity. It’s not possible for any one of my son’s doctors to understand all that there is to know about CF, let alone his personal experience with it. I consider it my job to learn all that I can to offer a personalized approach to treating him and giving him the best chance at a good health outcome. I collaborate with my peers, clinicians and patients, to share what we know and change what we can, together.”
Moore concluded by encouraging others to join her: “I am Emily’s Entourage, and you can be, too.”