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.

More community posts


Advocating Alongside My Sister With CF

Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.

Fiona Stevens
| 4 min read


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.

Abbe Granelle
| 7 min read


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.

Kat Carroll
| 6 min read


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.

Elaine Ruh, MBA, PHR, SHRM-CP
| 7 min read


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.

Elaine Ruh, MBA, PHR, SHRM-CP
| 5 min read


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.

Remi Orlinsky
| 2 min read