Today, the U.S. Senate released its version of the health care reform bill, titled the Better Care Reconciliation Act, and in response, the Cystic Fibrosis Foundation affirmed its opposition to the legislation.
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Hollywood often portrays people with serious illnesses as brave, inspirational characters. I don't always feel that way, and sometimes the real "fight" is facing that fact.
Listening to my body -- and hearing what it has to say -- is not always what I want to do, but what I need to do.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
Some days, the biggest struggle I have is accepting that I have CF.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
Today I am proud to introduce More Than CF. Your struggles, your achievements, your routines and the small surprises of your every day breathe life into the Foundation's work. You can get involved by sharing your experiences with us on Facebook, Twitter and Instagram and by searching #morethanCF.
Many individuals and organizations are out there serving people with CF and their families in their daily lives. Through the new Impact Grant program, the Foundation will fund individuals or organizations who have a program or project that benefits the community.
The Cystic Fibrosis Foundation presented four individuals with awards at the 2018 Volunteer Leadership Conference (VLC). The awards given were the Tomorrow's Leader Award, the Jena Award, the Alex Award, and the Dream Big Award.
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.