I am a mother of a 16 year old with CF. My husband and I have been involved in the CF Foundation since our first Great Strides Walk in May 2000. We have enjoyed being invited into different projects and fundraising activities wherever we are able to be productive locally in our chapter, as well as at the national level. Over the years, we have learned much and have enjoyed meeting the core character that is common in the CF community – PASSION.
When I was asked to participate in the CF Learning Network in 2015, I wasn’t quite sure what it was, but it sounded intriguing. And my husband and I have vowed to say yes to anything and everything we are capable of doing to help fund and find a cure for CF. In this collaborative environment, I was able to bring to the forefront some of the things I had long wanted to discuss and share with others things that had worked well for us as a family. It was also an opportunity to share things that hadn’t worked so well and areas of potential growth. While we have done this in our Minnesota CF community, this was a national forum that was being put together.
Being asked to give a phone interview of “our CF Story” was therapeutic as I was able to share not only our CF journey, but the periphery of our lives that had all been affected by having a child diagnosed with CF. It was clear that this was life changing for us, and to be heard was more significant than I had realized it would be. I came away from the research interview feeling like our story had been an effective tool and would impact some changes that were looming in the CF Learning Network think-tank.
Arriving at the CF Foundation national offices for the May 2015 Design Meeting was enjoyable, as I got to interact with people that I have already met due to volunteer leadership activities. I was also able to meet people I had interacted with only via phone to date. The collective sheer energy in the room was palatable. I truly had no idea what I was in for!
This was 2 full days of interacting and having very open dialogue in this room about targeting specific work groups that would be formed. We spent time sharing in daily life discussions of adult CF patients and hearing from caregivers and researchers. It was incredibly inspiring. To be present at this level of collaboration that was laser focused on developing a new method of delivering collaborative care was an experience that I still cannot quite define with mere words to this day. The biggest impact of the entire two days of meetings was when I was handed my name tag, and on it was a title that I didn’t expect, nor had never really been given to date as a CF mom. It simply stated “Expert.” As I processed that, it was clear that something significant shifted within me due to that acknowledgement. I felt heard. Isn’t that one of the most important factors of health and well-being? To be heard, so that communication and forward motion that is beneficial to all involved can begin. That meeting and the level of collaboration was something that gives me even greater hope in how we manage CF as we all work tirelessly toward a cure for this disease.