We're spotlighting five programs the CF community can join from the comfort of their own homes. From singing lessons to exercise programs, you can stay physically and mentally active and connect with others while physically distancing.
Site Search
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.
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.
Adjusting to life after my newly adopted son’s cystic fibrosis diagnosis has been challenging at times, but I will do all I can to support and advocate for him.
My son who has cystic fibrosis required extensive treatment as a toddler, which I believe had a traumatic effect on his mental health. With the help of therapy, I have helped him learn how to self-advocate and use coping strategies for his anxiety, starting when he was just 4 years old.