Today, the Cystic Fibrosis Foundation announced a collaboration with Deep Science Ventures to accelerate treatments that address the underlying cause of CF for every person with the disease. The collaboration will focus on uncovering and designing new technologies to address key scientific challenges on the Path to a Cure.
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.
I went from knowing nothing about cystic fibrosis to having the three most important people in my life diagnosed with the disease. I was shocked to learn that not only did my two children have CF, but also my husband had it.
My daughter, Ellie Frances, has faced a host of medical problems. Living with cystic fibrosis helped prepare me for the difficult decisions I've had to make along the way.
At various points in my life, I have faced ableist comments or reactions to my cystic fibrosis treatments, which have greatly affected me. I hope this blog post makes people more aware of the language they use toward people with chronic illnesses.