As you may already know, I'm obsessed with building online communities. Seriously, I go to sleep, wake up and walk to work thinking about how to do this better. I'm also a content strategist. That means I'm constantly on the hunt for fun and different ways to present important information about cystic fibrosis to people online.
Today I am proud to introduce More Than CF, a new way that people living with CF and the people closest to them can share information and experiences with each other and those of us at the Foundation.
Here at the Cystic Fibrosis Foundation, we do data really well: Through the CF Patient Registry, we collect information about people living with CF so that researchers, clinicians and the community can get a clearer picture of the affected population. Clinicians gather information during patient visits so that we can improve the care center experience and understand how to better support daily care. We fund and promote research to create treatments and therapies, and to target the underlying cause of the disease.
But if we're only looking at population numbers and hearing from clinicians and scientists, we're looking at only two dimensions of cystic fibrosis. People living with CF plus their family and caregivers -- YOU -- are the third dimension.
Your struggles, your achievements, your routines and the small surprises of your every day breathe life into the Foundation's work.
The premise of #morethanCF runs in three linked stages: Ask. Analyze. Share. First, using Foundation data as a jumping-off point, we'll ask a series of questions about life with CF that gets at more than just treating it. Second, we'll gather your tips and stories, analyze them and put them into graphics to give you a clear view of the community's responses. Finally, we'll share that information through social media and email -- and we'll encourage you to share as well -- so we can all learn from each other.
We're starting with a topic that's familiar to everyone living with CF: airway clearance. We know the numbers regarding ACTs, such as 73 percent of people with CF use the vest to clear their airways. But using the vest takes time. How are you passing the time when you're using your vest? What Netflix shows or YouTube channels are you watching? Do you have another go-to activity that helps clear your lungs? These are the kinds of things we're hoping to get at with #morethanCF.