Introducing #morethanCF

Today I am proud to introduce More Than CF. Your struggles, your achievements, your routines and the small surprises of your every day breathe life into the Foundation's work. You can get involved by sharing your experiences with us on Facebook, Twitter and Instagram and by searching #morethanCF.

March 14, 2016 | 3 min read
Emily Dulcan

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. 


Want to make sure you never miss a question or the community's answers? Sign up for our emails, follow the Foundation on FacebookTwitter and Instagram and make sure you search for #morethanCF.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Get Involved | About the CF Foundation

Emily is the online community events lead at the CF Foundation. She comes to the Foundation after serving for three years as digital director at the Peace Corps. Emily has worked as a digital strategist for nonprofits, agencies and political campaigns, including three years with Organizing for America. In 2006, Emily earned a master's degree in cross-cultural journalism from the Missouri School of Journalism. She loves traveling, reading, exercising, cooking and eating well.

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