Fighting with the Florios

Family and Friends,

This past year the pandemic has posted unique challenges, but we have also had much to be grateful for–from the exciting developments of Cystic Fibrosis Research and care to innovative technologies that will advance therapies for every one with CF. The driving force of this continued progress is the CF community including YOU, which remained strongly united and dedicated to our shared mission.

We are making significant strides on our “Path to a Cure” initiative and are currently funding 24 major research programs that cover a wide range of areas, including mRNA therapies, gene delivery and gene editing.

One of the most exciting moments in 2021 was the FDA approval of Trikafta for children ages 6 thru 11 who have certain mutations. This is a significant step forward in treating the disease at an early age, enabling us to stave off the most common complications of CF BEFORE they start. Sophia and Savannah received Trikafta during the summer and was on it for 3 months. This drug is a combination of 3 drugs one of which is Kalydeco (they have been on Kalydeco since April 2015). For our girls, there was no increase in their lung functions or in their weight gain, which for most taking the drug was the most notable improvements. With every drug there are side effects, and after 3 months it was decided to take only the Kalydeco. We are so fortunate that Kalydeco has been THEIR miracle drug and that they have been on it for most of their lives, while also looking forward to the next treatment.

Jackie has been homeschooling since Covid hit back in 2020. It has been a God send for all involved….Jackie was a middle school science - math teacher before she married Bryan. This has given the kids a terrific experience while keeping them healthy. This year she is teaching Sophia, a 7th grader, Savannah a 5th grader and Truman a kindergartener. Each child is thriving educationally, probably even better than if they were in public school. They love the fun activities and experiments, even I enjoy her classroom, and I am not a science or math person.

The Great Strides Walk is going to be an in person event this year. Mark your calendars for May 14, 2022. Location is at Exploration Place. Registration will start at 0900 and the walk will begin at 1000. To register to walk or donate, go to

https://fightcf.cff.org/goto/gayleforio2022

fightcf.cff.org/goto/gayleflorio2022

Looking ahead, the CF community has many reasons to be excited, but we know we are not done. Our dream is that EVERY person with CF will have the chance to live a long and healthy life….. a life FREE OF CYSTIC FIBROSIS. With your continued support, I am confident that we will realize that dream together. Love Mike and Gayle Florio