For the past 30 years, Emily Kramer-Golinkoff has fought a daily battle against cystic fibrosis, suffering from a rare mutation that hasn’t responded to treatment. She founded Emily’s Entourage to fight for the lives of others like her.
What is the mission of your organization?
To accelerate research for new drugs, treatments and a cure for rare genetic mutations of CF.
What accomplishments are you most proud of?
In December 2011, we started as an organization to raise awareness, and we quickly realized that we needed to translate funds to progress in the research arena. In January, we hosted, with the Penn Orphan Disease Center, a symposium for leaders in CF research from around the world. It was a huge success, so much so that we had a follow-up symposium last month. We’ve really mobilized the research community around a group of mutations that wasn’t even on their radar before.
What has been your biggest challenge?
I think that it’s so empowering and so moving, all the work that we’re doing to accelerate research in this area. But it’s also a tremendous responsibility to feel hope for your future. I have big eyes for the future. I realized early on that having self-pity doesn’t get you very far. When it comes to CF, I’m not so lucky. But, in many ways I’m very fortunate.