Bringing Us Together Online

I can say without hesitation that the cystic fibrosis online community is unlike any I've ever seen. In my new role, I am excited to see the very engaged CF community in action. I can't wait to communicate with everyone, especially those in the online community, and see where you'll take us next.

Oct. 28, 2015 | 4 min read
Emily Dulcan

To make changes -- large and small -- in the world, we need to feel supported and we need to feel that we have a voice. That's where communities come in -- and why online communities are so revolutionary. I've spent a big portion of my career fostering online communities, composed of people across industries and around the globe, with powerful visions for how the world can be.

I jumped straight into the deep end of the cystic fibrosis community -- the third week of my new job with the Foundation -- when I covered the North American Cystic Fibrosis Conference on social media. From just a few days in Phoenix, and a handful of weeks on the job, I can say without hesitation that the CF online community is unlike any I've ever seen.

Having worked in journalism, public relations and digital communications for practically my entire career, I'm careful with my words. As a strategic communicator, my goal is to make sure messages are as clear as possible and that they communicate the right information and sentiment. But, the Southern Californian valley girl in me embraces hyperbole: “totally,” “awesome,” “radical,” “very.”

That adverb “very” has lodged itself in my mind ever since I started getting to know the CF online community. Most writers and editors will tell you that “very” is superfluous and should never be used. Choose a more descriptive word for what you're naming: she's not “very intelligent,” she's “a genius;” the challenge isn't “very large,” it's “gargantuan.”

But, so far the CF community -- especially the people and groups I'm encountering online -- are owning “very” in a way that I've never anticipated in all my years of communicating: You are all very informed, very passionate, very active and very very committed.

NACFC gave me a chance to see the very engaged CF online community in action: from clinicians and researchers tweeting about their sessions; to the moms of kids with CF organizing themselves and communicating with each other; and to the adults with CF at home live-streaming plenaries, engaging with our content to add their own experiences and ideas to the conversation.

Plus, this was a very big year for the Foundation on social media at NACFC. We increased our tweets by more than 230 percent compared to last year's conference, reached more than 320,000 people on Facebook and posted one of our most-liked photos ever on Instagram.

For me, NACFC was just the beginning. In my new role, I am excited to use digital communications and technology to help build the CF online community in ways we never imagined. The fact that we must organize ourselves as an online community -- first and foremost because of potentially harmful germs spreading among people with CF -- gives us a real opportunity to refocus the Foundation's communications as it becomes a truly patient-centered organization.

Thanks to the Internet, there is practically no limit to the potential ways we can connect, learn and share -- from our CF Community Blog, to hashtag campaigns on Twitter and Instagram, to video hangouts, to conversations on our Facebook page.

I want to help the CF community, and the Foundation, become the leaders in patient-centered digital communications. Together, we will better assist people with CF and their communities to address physical and emotional health needs; get information about CF therapiestreatments and clinical trials; and connect with caregivers, researchers and each other. I can't wait to communicate with everyone, especially those in the online community, and see where you'll take us next.

I am very excited to be connecting with you all.

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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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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