The Cystic Fibrosis Foundation's Greater New York Chapter recently recognized leading journalist Scott Pelley at the 14th annual Breath of Life Gala for his unwavering dedication to those living with CF.
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How do you define passion? For me, it's simple. It's the things that I enjoy, the things that I love and the things that I want to do continuously. However, trying to figure out what those things are is not so simple.
Having spent her career working for a cure for cystic fibrosis, Patty Burks is still not content. She wants to remember her son in a way that makes a difference for others. That's why she has made the CF Foundation a beneficiary of her life insurance policy. This gift to the Foundation meets a need in her heart.
Sometimes, being the “squeaky wheel” is the only way to make a positive change.
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.
There is no greater instinct than a mother's need to protect, and I have had to willfully disregard it countless times in my journey with CF.
As we reflect on 2016, we are so thankful to our friends around the country, dedicated researchers, care center professionals, volunteers and, most of all, those of you living with CF.
The Institute for Clinical and Economic Review (ICER) is developing an assessment of the clinical effectiveness and value of lumacaftor/ivacaftor (Orkambi®) and ivacaftor/tezacaftor (VX-661). The Foundation is sharing input throughout the process to help incorporate the patient and clinical perspective.
While I am not grateful for having cystic fibrosis and cystic fibrosis-related diabetes, I have no doubt that if it weren't for me having CF, I would not have become the person that I am today.
Google has made it easy for everybody to research cystic fibrosis, but CF is only part of my story and how I tell it is up to me.