Celebrating the CF
Community

“

Being a part of the CF community gives me a chance to give back and also learn from others and their experiences with CF.

–John, living with CF

The cystic fibrosis (CF) community is one of a kind, and it’s the individuals within it who make it so special. To those living with CF, their caregivers, and the professionals who have dedicated their lives to providing care and support, we see you and we appreciate you.

Finding people to lean on

CF can be an isolating disease, but the last thing you need to feel is alone. Support can be found in many ways and through many people, including those you see in real life on a daily basis like friends and family as well as peers in the CF community who you’ve connected with virtually. There are so many people in your corner near and far who can relate to the barriers you may face at all stages of life, and who understand the importance of celebrating your successes. Feel empowered to lean on each other.

Noor, an advocate with CF drinking coffee with a friend.

Sometimes it can take a village to help make growing up with CF feel less daunting, but we are all here to support the robust and fulfilling lives of this community together.

“

I am so honored to be part of our CF community. I’ve had the privilege of working with families for over 24 years… and getting to be part of a family’s journey… going from babies to growing up and living adult lives, it’s such an honor to be a witness to that, and to know that I may have had a small part in them achieving the things that life is meant to have in store for them.

–Amanda, Social Worker

For the love of caregivers

To all the parents and other primary caregivers of children with CF, thank you! It hasn’t always been easy, but the essential work you do everyday is invaluable. We know it can sometimes feel overwhelming, and if that happens remember, there are people to turn to who understand your situation.

There are always helping hands when you need them. Start at your pediatric CF center. Depending on your needs, they may be able to direct you to resources for emotional well-being, finances, nutrition, and more. Sometimes you just need a place to talk, and that’s okay too. In-person and online support groups can be a great place to connect with other members of the community who are going through, or who have already gone through, some of the same experiences. If you’re just looking for the occasional connection, try looking into parent groups or following CF-related hashtags on social media, or through nonprofit groups and organizations, such as the Cystic Fibrosis Foundation.

Not finding the kind of groups you’re looking for? Consider starting your own and giving other caregivers like yourself a safe place to learn and grow together.

“Being a part of the CF community truly is an honor. Meeting the families, meeting the people that are caring for the CF community, meeting the researchers. These people, this community, is powerful and I just get so much strength just knowing that these are the people in my corner.”

–Magen, mom of twins with CF

Looking forward to the future, together

No matter where you are in your CF journey, each new day comes with new experiences and this community is here for you every step of the way. For more from Everyday CF, follow us on Facebook and Instagram @everyday-cf or catch up on a range of topics covered by the Uncommon Lungs podcast.

“