[emily-kramer-golinkoff]

Just want to sincerely thank you for keeping the spotlight on the outlying 10% during these times of immense celebration and relief in the CF community. It would be easy to be consumed with celebration at such an enormous accomplishment and such a landmark day in the history of CF. As a member of the outlying 10%, I share in the extreme happiness and hope for so many CF friends. My happiness is joined by desperation. We want to be part of the celebration and we remain painfully aware that time spent waiting for more progress means lives lost to this awful disease.

One of my biggest fears has been that everyone would get a breakthrough and then go back to living their lives (an understandable response). My hope is now that we’re so close to 100%, we can use this progress to gain momentum – to race even faster, to push even harder in recognition of the fact that those of us left behind are still living with the same killer disease that CF has always been (and nobody know the horror of that better than the other 90%).

On top of that, enduring CF without strong glimmers of hope in the near future is the hardest thing of all. We need to fill the pipeline with lots of glimmers of hope for the 10%. We need creativity, and urgency, and we need the whole CF community to remain as deeply and fervently committed as ever before.

We are only as strong as our sickest link and I hope with all of my heart that nobody loses sight of those of us who are still struggling so much to endure. I hope that one day, we’ll be able to tell the story of the CF community that was 1 for all and all for 1, that used these advances to FUEL the race to rescue EVERY member and, critically, to do it FAST. Time to rescue is the ultimate question of life and death. While 90% is undoubtedly remarkable, I believe in science, I believe in the CF community, and I believe that we can do better and we must do better and do it fast.