Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
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Life isn't always full of happy moments. Some are heartbreaking and some are crushing. But through it all, the life Kari and I shared together were the happiest moments of my life. I wouldn't trade them for anything. They were worth every second.
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.
The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
The CF Foundation's CEO reflects on the passing of Mary Weiss, who helped blaze new trails in the fight against CF.