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.

July 1, 2021 | 4 min read
Fiona Stevens

My family and I all have different ways of raising awareness of cystic fibrosis. At the beginning of each school year, my younger sister, Aine, who lives with CF, brings her vest machine to class and explains to her classmates her morning routine of treatments and pills to educate and share her experiences living with the disease. My parents always take the time to explain to new people they meet the long list of medications my sister takes over dinner, holding their interest on how revolutionary therapies have changed her life. For me, my advocating journey began when I was 13 years old at the Foundation's Teen Advocacy Day (TAD).

Aine (left) with her sister, Fiona.

TAD is an event like no other - teens from around the country gather at the nation's capital to speak to their representatives about their loved ones with CF and important policy changes that could improve their lives. On my way to Washington D.C. for the first time, I was coaching myself on the insurance plans for those with pre-existing conditions, the importance of funding for the National Institutes of Health and Food and Drug Administration, and how they served people with CF.

Learning about the American health care system was daunting at first, but I realized that I knew the ins and outs of CF. After attending TAD for several years, staffers began to recognize me each June, and had more questions about how my sister was doing and what they could do to help. That, at its very core, is what advocacy is all about.

Spreading awareness about CF, engaging others, and inspiring them to answer the call to action has always been our goal, no matter the setting.

My family and I will talk to anyone and everyone from the bagger at the grocery store to legislators. After watching my sister grow up with this disease and never letting it slow her down, I know that there is nothing that could possibly stop me for fighting for her and the CF community.

Due to the COVID-19 pandemic, this year's TAD was virtual. While it's not quite the same, a virtual event has allowed for teens with CF to participate as well, including my sister. It meant the world to me to have my sister by my side as we shared the lobbying spotlight and told our story together.

For Aine, this opportunity has been an amazing experience and a blessing for her to participate especially with other teens with CF across the nation. She prepared for weeks in advance of the event because she knew the importance of her story, and sharing it, keeps the advocacy world turning until the path to a cure for all is clear.

Everyone in the CF community has a story to share. We learn early on how to explain this complicated disease to friends, family, and sometimes, complete strangers. I don't think I've ever met a person in this community who was scared to explain what life with CF is like, or to spread awareness and knowledge.

No matter where you come from, what age you are, or your connection to CF, everyone is committed to the cause for a cure. This year I have never been more grateful to be a part of it.

Being able to advocate Aine's story has shaped my life in many ways. Each year I have made life-long friends within the CF community and learned something new about the ever-changing federal health care system. Most importantly, it's given me a direction in life that I aim to pursue. Sharing our CF stories with those outside the community is a critical part of advocacy, but it also shows ourselves that we are not alone in this fight -- we are advocating for each other.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Fiona is a sophomore at Quinnipiac University and is studying and undergrad in film, television, and media arts as well as pursuing her master's degree in elementary education. She wants to work in children's educational programming, specifically in the content creation for children with genetic disorders. You can connect with her on LinkedIn or on Instagram.

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