In 2015, Cystic Fibrosis was a disease I read about in a Respiratory Therapy text book.
In 2016, Cystic Fibrosis wasn’t just a disease in a book, but one that I saw affect real people through a YouTube channel called The Frey Life.
In 2017, Cystic Fibrosis was a disease that started to affect me personally, because I somehow collided with these people from YouTube on a beach and we became friends.
After a few years of loving someone with CF, this disease has weaved itself throughout my heart.
It wasn’t long ago that I was watching my friend decline faster than I ever expected. I was waiting for updates about whether she would be accepted at the transplant center she was being evaluated at, and was trying to mentally prepare for the terrifying reality that transplant may be much sooner than I expected. (CF is terminal, and while a lung transplant won’t cure someone with CF, it can give them more time.)
BUT, something incredible happened. My friend was able to start a new trial drug that wasn’t yet approved by the FDA, as some patients who didn’t qualify for the study were able to get it by qualifying for compassionate use. This drug blew my mind. It isn’t a cure, but it has given my friend more TIME. This drug has improved her lung function, has allowed her to enjoy her days so much more, and I’m praying it will put off the need for transplant for many years.
Cystic Fibrosis will never again just be words in a text book. CF is essentially invisible, but it is brutal. The more fundraising people do for the CF Foundation, the more money will go into research and more incredible drugs will be made. If you can’t donate, that’s okay! Feel free to share if you would like. Spreading awareness is so so important.
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There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!