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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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My Life Before and After the Affordable Care Act

Having two sons living with cystic fibrosis, I struggled for years with the financial burdens and restrictions of the insurance market. Since the Affordable Care Act was passed in 2010, I no longer have to worry about lifetime caps and astronomical premiums -- two issues that caused enormous grief for my family.

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| 7 min read
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Choosing My Health Over My Livelihood

Because of the threat to my health caused by COVID-19, I had to give up my dream job as a nurse practitioner. Now I am asking for paid leave expansion.

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| 6 min read
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Empowering Your Outer Circle to Advocate

I advocate for my son who has cystic fibrosis by sharing his story to increase awareness. From new friends to legislators, I tell as many people as I can about this disease, how it changes your life, and how we are fighting this thing head on.

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| 7 min read
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Realizing My State Representatives Are Human

While we often see politicians on the campaign trail, there's another side to them that the public doesn't always see. By sharing my story, I've made real connections with my state representatives to help them better understand CF and positively impact my son's future.

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| 5 min read
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Watch Teens Make Their Voice Heard on Capitol Hill

Watch how teens advocated on behalf of their friends and family with cystic fibrosis on Capitol Hill during the 10th annual Teen Advocacy Day.

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| 2 min read
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A Very Personal Advocacy Story

I got into advocacy to work for the common good of all people with cystic fibrosis. Little did I know that this work would help me in a very personal way.

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| 4 min read