Everyone with cystic fibrosis faces the fear that their next infection could be the one that doesn't respond to treatments. Chronic infections eventually led to my sister's death. After seeing what she went through, it became clear to me that we have an immediate need for better anti-infectives.
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Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing, a podcast, or video, their work has been shaped by their experiences of living with CF. Learn what creating these works has meant for them and what readers and listeners can take away.
As a professional vocalist, for most of my life I tried to hide my CF. But, after opening up about my disease and creating a program to help others through singing, I realized just how powerful my voice really is.
In the fall of 2017, I was asked to join the Advanced Lung Disease Guidelines Committee as a parent representative because of my work as a member of Community Voice. I was honored and said, “Yes!” I am so pleased I did, because my experience gave me great hope and valuable insight into the dedication that goes into improving cystic fibrosis care.
As co-chair of ResearchCon, I had the opportunity to work with other members of the cystic fibrosis community to help set the agenda for a virtual research conference on CF infections. The event left me in awe of the scientists and the work being done around the world to fight this disease.
When the news of the Trikafta™ approval came out, I was simultaneously excited for people with CF that would benefit and disappointed that another new medicine is passing me by. But, hearing about the next wave of research into a cure for ALL people with CF has me looking forward to the future.
Recipients include five innovative programs from around the country that empower the CF community.
Ray Poole and Julie Riedy to lead efforts in Washington, D.C., for volunteer conference, Until CF Stands for Cure Found.
The Cystic Fibrosis Foundation presented five outstanding members of the CF community with awards at the 2019 Volunteer Leadership Conference. These included the Tomorrow's Leader Award, the Jena Award, the Alex Award, and the Dream Big Award.
To support a pair of colleagues' adoption of a baby boy, Christian, Merrill/Bank of America has raised more than $32,000 through their matching gifts program.