We're spotlighting two authors who have written books based on their experiences with cystic fibrosis. Learn what the experience of writing them has meant for them, and what they hope their readers will get from reading their stories.
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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.
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.
When I first learned that my two sons had cystic fibrosis nearly 20 years ago, I barely understood the disease, let alone how to fight back. After contacting the Foundation, I learned just how easy it was to make my voice heard through volunteering.
With another fantastic Volunteer Leadership Conference (VLC) in the books, I want to share some of the things we learned and how we can keep the momentum going through National Volunteer Week, and all year long.
For people with cystic fibrosis, our story is the most powerful tool we have to stand up for ourselves and fight for our needs. Although I can't always be there to share my story with legislators in person, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action to make my voice heard.