Luck is not usually a word that comes to mind when I think about cystic fibrosis. However, with each and every passing year my son has lived with this disease, I have gained an enormous amount of appreciation for this community to which I now belong, and the extraordinary work we are accomplishing together. While I would have never asked for CF to enter my life, there is not a single day that goes by that I do not thank my lucky stars that I have the Cystic Fibrosis Foundation on my side.
I once read an article in which a pediatric nurse compared living with cystic fibrosis to the story of David and Goliath. She described children, like my son, with their arms raised, stones in hand, shivering in the shadow of this enormous disease. However, what this article fails to mention is that our children are not alone in their battle. They do not have to march up to their enemy all by themselves. If you step back and examine the reality of the situation, you will see that standing behind the 30,000 individuals living with this disease is the entire CF community. And in each of our hands, we also have a stone. And we are definitely not afraid to throw them as hard, and as far, as we can until a cure is found.
I shared this during my opening remarks to an audience of volunteer leaders at the Volunteer Engagement Conference (VEC) in Phoenix. As the co-chair of the event, I was asked to share my thoughts on cystic fibrosis within the framework of the conference's theme of community and collaboration.
Volunteering in our hometowns or sitting at a table in the middle of an enormous conference room, we may feel as though we are gravely out-numbered at times, wishing we could do more. What we need to remember is that we are not alone and we don't have to necessarily have to work harder; we just need to keep on working together.
While there is still a lot to be done, through our joint efforts, we are definitely standing on the brink of a new era. For the first time in our history, there are more adults living with this disease than children.
Several of the videos introduced throughout VEC featured CF adults with grey hairs, laugh lines and even reading glasses. We are literally changing the face of this disease.
To further prove this point, the adult panel showcased an extraordinary story of one couple who continues to defy expectations and beat the odds.
I was so moved by the story of Sara Dun, who was diagnosed with CF at the age of 2, and was not expected to live past the age of 10. She is now a wife, double lung transplant recipient and (most recently) a mother. Her husband, Michael, has remained a positive and steadfast force in her life. Sitting side by side on the stage, the two described navigating through some of life's biggest challenges together. Sara and Michael personified collaboration. While their sense of teamwork is on a smaller scale than the entire workforce of the CF Foundation, the principles behind it remain the same.
As Sara held her son in her arms, she credited her life to the people around her. She thanked her husband, family, friends, medical team and, of course, the CF Foundation: the collaborative efforts of her community. And she eloquently expressed the anthem of this amazing community to which we all belong: “Working together, we can exceed every predicted expectation.”
I couldn't have agreed more. And once again, I felt extremely lucky.