How I Got Involved with My Advisory Board
It all started with a letter I received from the Central Connecticut Cystic Fibrosis Center (CCCFC) in Hartford, Connecticut. They had just attended a national conference where they learned about Patient and Family Advisory Boards. Now, they were inviting me and several others to join them in forming their own Board.
At the first meeting, what stood out most was the fact that we were simply a group of people all working toward a common goal: doctors, nurses, nutritionists, foundation directors, social workers, people with CF and parents. (I hope I didn’t leave anyone out!)
Many meetings have passed since then. Today, everyone on the Board is on a first-name basis, and all of our ideas, concerns and actions are considered equally important. We work hard not to bring our own personal agendas to the table, although sometimes we use personal experience as a reference point for certain topics.
We work as partners and have mutual respect for what each individual has to offer. There is plenty of discussion—both pro and con—on whatever topic is before us. Yet we always work together to get to an answer.
I feel that the Patient and Family Advisory Board at CCCFC is the most natural progression for me as the mother of a child, now a young adult, with CF. Being on the Board lets me stay in touch with the providers that have become such a part of our lives. It lets me give back to this community, in some small way, what they have given to my family.
I also take great satisfaction in knowing I’m part of an entity that affects change and works to continually improve the lives of so many people. As my husband and I have come to learn over the years, we’re not good fundraisers. We always felt guilty about that. But being part of this Board fills the void. Even though I can’t bring in a lot of money to fund the research, I know I’m doing my part as a mother.
Most importantly, thanks to the Board, I have come to clearly understand that my role in my daughter’s care is as advisor and supporter. And my role in the CF community is team member, helping to provide the best of care possible.