From Possibility to Progress: Reflections on My First NACFC
Fifteen years after discovering the promise of gene editing with Claire, a moment at the North American Cystic Fibrosis Conference brought everything full circle.
About 15 years ago, Claire and I were listening to a Radiolab podcast about a new scientific technology called CRISPR. I remember how fascinated she was by the idea that scientists might one day be able to edit genes and potentially change the course of genetic diseases like cystic fibrosis.
Fast forward to this year's North American Cystic Fibrosis Conference (NACFC) in Atlanta, where I attended for the very first time as Executive Director of Claire's Place Foundation.
During a plenary session on CRISPR and the future of gene editing, we heard about the progress being made toward clinical trials for CF. Sitting there, surrounded by researchers, clinicians, and advocates, I immediately thought of Claire and that podcast we had listened to all those years ago.
It was one of those moments when the past and future seemed to meet. What had once felt like an extraordinary scientific possibility was moving closer to becoming a reality. I could only imagine how excited Claire would have been.
The entire conference was an incredible experience. Being surrounded by so many brilliant, dedicated people working to improve the lives of those with CF reminded me just how much progress has been made and how much determination exists within this community.
I was also grateful for the opportunity to connect with our longtime partners at Vertex Pharmaceuticals. Hearing about their progress in expanding global access to CF treatments was encouraging, and it was wonderful to share how Claire's Place Foundation continues to evolve alongside the community we serve.
Another highlight was having the opportunity to meet Fred Van Goor, one of the scientists at Vertex whose groundbreaking work helped make treatments like Trikafta possible. Having witnessed firsthand how dramatically these therapies have changed the lives of so many people with CF, it was pretty incredible to meet someone who played such an important role in making that happen. It's one thing to hear about scientific breakthroughs, but something else entirely to meet the people behind them!
As treatments improve and people with CF are living longer, we're seeing an entirely new set of needs emerge. For many, the conversation is shifting from simply surviving to imagining a future filled with education, careers, financial independence, and opportunities that may have once seemed out of reach.
Through our Work Proudly Program, we're helping people navigate those possibilities with career counseling, educational assistance, professional development, and individualized support.
At the same time, we know that medical advances haven't reached everyone, and that many people with CF continue to face significant health challenges. Our Extended Hospital Stay Grant Program remains just as important, helping families maintain financial stability during lengthy hospitalizations.
That's what makes this moment in CF history so remarkable. We can celebrate the extraordinary advances in science while recognizing that improving quality of life takes more than medical treatment alone.
Claire once said, "Realize you are part of a huge epic story that is humanity."
Sitting in that conference room, listening to the possibilities of gene editing becoming something tangible, I felt those words in a whole new way.
Fifteen years after Claire founded this organization, I'm incredibly grateful that Claire's Place continues to be part of that story, helping people with CF not just live longer, but live fully.
