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.
Dr. Jennifer Taylor-Cousar is passionate about bringing attention to health inequities in cystic fibrosis. By partnering with the CF Foundation, other organizations, and the CF community, she believes we can work together to create equitable health outcomes for everyone with CF.
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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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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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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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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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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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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.