We Will Always Celebrate CF Awareness Month

Happy Cystic Fibrosis Awareness Month! It’s a special month for the CF community filled with advocacy and spotlighting our experiences. Although CF awareness month will be slightly different this year than year’s past, it’s still a time to celebrate and enjoy. All the people living with CF, parents, and family and friends, I hope the month of May brings you all the support and fundraising we deserve.

History of CF awareness

In the month of May, individuals don their purple “I Am a Fighter” t-shirts and ribbon lapels and rally together to celebrate spreading awareness for CF--and the incredible progress made so far. Different events are held across the nation in order to raise money and support new treatments and better quality of life for people living with CF. That’s how it’s been since I can remember, anyhow.

Not much information is available about the specific history of CF awareness month and how it came to be. However, events like Great Strides Walk--the largest national CF fundraiser-- which first started in 1989 have a long-rooted history of kicking off in the warmer month of May.¹ When did May first become all about CF awareness - it’s hard to say?

In 2008, the U.S. Senate officially declared May as National CF Awareness Month.² Encouraging the public to support critical research and the hope against the fight of CF. In addition in 2014, three states--New Hampshire, Georgia and Pennsylvania--passed resolutions officially recognizing May as CF Awareness Month.³ These declarations were especially important to the CF communities highlighting May as a publicly special month in CF advocacy and awareness.

Ways to spread awareness from home

CF awareness month may look a bit different this year considering the impact of current events. People with CF generally are discouraged to gather in groups unless outside while maintaining the “6 foot rule”, that’s why many of us look forward to the Great Strides Walk during this time when we can safely gather together. Even without in-person events, we can still spread awareness from the safety of our home. Some ways to spread awareness from home include:

• Share CF facts on social media
• Participate in a virtual walk
• Set your profile picture on Facebook to an awareness photo
• Create a t-shirt campaign and donate the funds
• Encourage people to sign up to be an organ donor
• Share your own CF story
• Reach out to your local CFF chapter and ask how you can help
• Create CF inspired art with sidewalk chalk or window displays
• Share a post from Cystic-Fibrosis.com or favorite CF blog
• Donate to a CF cause close to your heart

As a group, we know how to successfully spread awareness from the safety of our homes better than anyone! Get loud during the month of May!

Importance of sharing your story

I believe the most impactful way of spreading awareness is through the power of your voice: sharing your own CF story with your friends and family. It’s always helpful when trying to empathize with someone else to connect their open and honest thoughts to an experience. It makes it more real and tangible.

Often when living with CF we can forget all that goes into staying stable and managing our disease because it’s our normal. If we want people to care about CF, arguably they need to understand what it’s like living with CF and why their support is so vital to improving our lives and quality of life.

The way you go about sharing your story is your own. Be creative and honest about how CF has impacted your life. This is where your unique voice is the strongest!

How do you spread CF awareness during the month of May? What can others learn about CF from your story? Share in the comments below!