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CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

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The Ultimate Gift: A Cure for Tobin

The initial sadness we felt when learning that our son had cystic fibrosis quickly gave way to our determination -- as a family -- to react in a productive way.

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Dec. 21, 2017 | 4 min read
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When a Loved One Dies, What Happens to the Love You Shared?

When my son Sam passed away at the age of 9, people told me that the love we shared would never die. But, it wasn't until I received an unexplainable gift on the first Mother's Day after his passing that I truly believed it.

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Dec. 20, 2017 | 6 min read
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The Matilija Poppy Club: Navigating the Loss of a Child With CF

After our son Sam died in 1990, I felt a kinship to everyone impacted by cystic fibrosis. I knew they could understand what we'd been through: parenting and losing a very special human being we loved so deeply.

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Dec. 12, 2017 | 4 min read
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5 Ways to Keep Your Toddler Busy During Treatments

Having trouble finding things to keep your toddler occupied during treatments for cystic fibrosis? Here are five tips that do the trick for my 3-year-old son, Major.

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Nov. 10, 2017 | 4 min read
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Becoming the Hero of Your Own Story

Although keeping up with daily cystic fibrosis treatments can be frustrating, it is key for staying healthy and living the life you want to live. So, Superhero Big Air Jerry was born to help kids with CF feel more empowered in their daily CF care and overcome challenges through positivity.

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Oct. 17, 2017 | 4 min read
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Maintaining A Healthy Relationship While Raising A Child With CF

My husband and I knew the statistics. Parents of children with chronic illnesses have above-average divorce rates. This didn't hit home until we had an opportunity to step away and realize how important nurturing our relationship really is.

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Oct. 11, 2017 | 5 min read