Parent Turned Passionate Advocate

March 14, 2010 is a day I will never forget. It was the day my son was born, along with his twin sister. And it was the day he was diagnosed with cystic fibrosis (CF).

Anyone that has experienced the debilitating blow of a diagnosis with a life-shortening illness knows that it changes you. After the so-called dust had settled, I was compelled to do whatever it would take to save his life. If we were going to lose this fight—something I don’t even want to imagine but that lives in the back of my head every day—I had to know that we did so daring greatly.

In 2011, just a year after his diagnosis, I learned about an international conference focused on cystic fibrosis that I desperately wanted to attend. This was a meeting where nearly 4,000 of the world’s best CF doctors and scientists would gather to discuss the latest and greatest in cystic fibrosis research and care, and I wanted to attend and learn all that I could to give my son the best chance of beating this disease. The problem? This conference wasn’t designed for patients and families, and I wasn’t invited.

I jumped through many hoops, getting support from the local chapter of my advocacy organization and an endorsement from my care center director and finally was invited to register and attend. I paid my own way and drove my family of 6 nearly 1,200 miles to join the meeting, and it was worth every bit of my effort. For 3 days I sat, listened and learned. I wrote down what I didn’t understand and spoke up when I had questions. Toward the end of the meeting, I asked the organization hosting the event why more patients and parents weren’t invited to participate, and the answer I received was disheartening: patients and families were a distraction to the highly scientific conversations taking place here. I was heartbroken. A distraction? How could I help people see what I believed so deeply—that by having patients and families as partners, putting them front and center to share their stories, their experiences, their expertise, and combining that with the clinical expertise of the many doctors and scientists working so hard to cure this disease, that we could go further than ever before?

I went back to my hospital where I was fortunate enough to find a team dedicated to building systems that do just that: harness the inherent motivation and collective intelligence of all stakeholders in a system, making it easier for everyone to contribute what they have and know, and learning what they can to achieve transformational change.

Being able to contribute to something—and feeling like my contributions are making a difference for me or for someone else—is the first step on my path to a new story. That gives us all hope, meaning, and a sense of belonging. I think about how we might be able to shift away from the post-traumatic stress of diagnosis or disease progression and toward post-traumatic resilience, something that science has proven comes when one feels they are making a meaningful contribution. I imagine how that might translate to successful transitions, productive partnerships and improved health. And I believe that the job of those who want to help is to stand together, working together, side by side to achieve our shared goals.

If we can shine a light on all that people know and do, in whatever capacity that might be, I believe we can transform health and care.

Erin Moore is an ePatient advisor for Lilly Trials. Have you ever “crashed” an industry conference? We’d like to hear your experience in the comments below or @LillyTrials.