After turning 60, I decided to mark the milestone by creating a “living list,” 60 things I could do to raise awareness and money for cystic fibrosis care.
Site Search
When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled.
Galapagos and Cystic Fibrosis Foundation Therapeutics Sign €1.3 million* Agreement
Cystic Fibrosis Foundation Therapeutics to Provide Alnylam with $1.5 Million in Funding for Discovery Efforts
Growing up, Keenan Flynn rejected what he saw as negative messages surrounding cystic fibrosis. Keenan credits a healthy mental attitude, and a non-acceptance of the negative messages about his health, for his physical development.
Ever wondered what it takes for a potential cystic fibrosis drug to become approved by the U.S. Food and Drug Administration? Here's an explanation of the four phases of clinical research.
My exercise routine has gone through quite an evolution from college to motherhood and life on the transplant list.
Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
When I was diagnosed with CF at 22, I was relieved. I could start treating the disease we'd been trying to identify for years. But after the initial excitement, I started facing issues of denial, anger and confusion…so I ran.