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.
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I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”
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.
Although I did my homework before having surgery to remove part of my liver, the process presented me with surprises and challenges. Here's what I learned from it.
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.
Although cystic fibrosis is often considered to be primarily a lung disease, it is actually so much more.
I have had two collapsed lungs in three years. Here's what I learned.
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.