When he isn't with his family or at work, Jeff Burnett can be found leading a team of 30 cyclists and training for the Cystic Fibrosis Foundation's CF Cycle for Life event.
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A reality show inspired this family to create an ingenious fundraising and awareness event for cystic fibrosis.
More than 800 guests gathered to celebrate the therapeutic benefits that surfing brings to people with CF at the 8th annual Pipeline to a Cure gala.
While I would have never asked for cystic fibrosis to enter my life, there is not a single day that goes by that I do not thank my lucky stars that I have the Foundation on my side.
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.
Bonnee Binker and Paul Motenko to lead efforts in Washington, D.C., for volunteer conference, teamMATEs: Together Until It's Done.
The radio stations are filled with holiday music, but as 2015 comes to a close, I find myself listening to an entirely different playlist. In my mind, there are not only songs that make me reflect on the path that my family has so carefully traveled so far, but also the hope and the promise of all the good things yet to come.
Today, I no longer feel tied to a hospital bed and a grim diagnosis, and I have you to thank.
The U.S. Food and Drug Administration (FDA) approved the use of ivacaftor (Kalydeco®) today for people ages 2 and older with cystic fibrosis who have at least one of the following five splice mutations: 3849+10kbC->T, 2789+5G->A, 3272-26A->G, 711+3A->G, E831X.