Although I don’t consider having a chronic illness like cystic fibrosis a good thing, I accept it and I think others should, too.
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I grew up thinking I would never be able to have children because of my CF. While advancements in treatments have made motherhood a possibility for many, I ultimately made the painful decision to not have children.
My brother, Josh, who has cystic fibrosis has been through more struggles than anyone I know, but he has always kept a positive attitude -- even while awaiting a lung transplant. This outlook on life inspires me and helps me see the best case in any outcome.
Our hearts stopped when we first heard that our grandson, Jase, had cystic fibrosis. We didn't even know what it was. However, we have learned a lot along the way and have gotten used to rolling with the ups and downs of this disease.
When my wife convinced me to undertake a hike up to Angel's Landing, I pictured the physical challenge of it, not the friendship we would develop with another couple on the way up.
After starting Trikafta, I decided to try running again, and I grew to love it. Because of COVID, I had to conduct my own races in 2020, but now I have joined a running group and am preparing to run my first marathon at the end of September.
Foundation to fund up to $110 million for collaboration to accelerate the development of genetic therapies for CF
The Cystic Fibrosis Lung Transplant Consortium Biorepository and Patient Registry, in collaboration with Cleveland Clinic, will provide critical clinical data and samples to support future research investigating complications of lung transplant.
The Cystic Fibrosis Foundation supports universal masking in school to protect people with CF and other health conditions against COVID-19.