The Impact of Advocacy Beyond the Hill

Every year, teens like me advocate for cystic fibrosis — either sharing their own experiences with CF or speaking on behalf of a loved one. This experience can have a huge impact on us, even after we return to our daily lives.

July 3, 2024 | 6 min read
Katherine-Black-Headshot
Katherine Black
A teen advocate speaking with a congressional staff member

Every year, teens from across the country gather to advocate for the cystic fibrosis community. The value of advocacy is tremendous, especially for a rare disease. Sometimes the people we talk to have never heard of cystic fibrosis. Teen Advocacy Day projects the voices of the CF community. When we show up for things we care about, we show the world that our cause is important.

Whether these young advocates are living with CF and virtually meeting with their members of Congress or are speaking on behalf of their loved ones in Washington, D.C., there are many ways teens are impacted by their experiences advocating on the Hill. I, along with this year’s other Teen Advocacy Day interns, have a collection of unique experiences, and we want to share why we advocate and how it has impacted us.


Katherine Black smiling with her sister Lauren, who has CF

My name is Katherine Black, and my older sister, Lauren, has cystic fibrosis. Growing up, my sister was frequently hospitalized. I struggled with the anxiety surrounding this disease and the fears I had for my sister’s future. While that feeling is tough to shake, advocacy provided an opportunity for me to do more to help my sister. I developed a passion for advocacy work, and I felt I had finally found a way to truly take action to help my sister. Teen Advocacy Day was something that just clicked for me. I started as a very shy, nervous 12-year-old and have continued advocating every year. I’m now 19 years old and a 2024 Teen Advocacy Day intern. Through advocacy, I have found my confidence and strength. I truly grew up with this program, and I learned so much about the power of advocacy, sharing my story, and standing up for what I believe in. I will not stop spreading awareness and supporting my sister and the CF community until a cure is found — until it’s done!  

— Katherine Black, sibling of a person with CF


Megan Riordan smiling in front of a field of tulips

I first attended Teen Advocacy Day in 2020, the first time teens with CF were able to join virtually. I was excited to participate and meet people with similar experiences, but I was also terrified. Before this, I had kept my health and diagnosis as private as I could. I had just started high school and I wanted to have a normal life; I did not want to be different from my friends and family.

By talking to other teens with CF, creating videos, sharing my story on social media, and meeting with members of Congress, I became more and more confident in myself and my journey with CF. After advocating, I became more involved with my local CF Foundation chapter, and I was much more open about my CF story. I joined and later led the chronic illness and disability alliance at my high school, and I am now involved in a similar organization in college.

This year was my fourth time virtually advocating, and I appreciated sharing my experiences, connecting with others, and learning from the new teens that are joining us this year. I am so grateful for Teen Advocacy Day and all the friends, experiences, and memories that have come along the way.

— Megan Riordan, young adult with CF


Brooklyn Klein speaking with a congressional staff member

The first time I advocated, I was 16 years old. I had never participated in any event where I would get the opportunity to speak and advocate for a topic that I was passionate about. In the days leading up to my first meetings, I was scared. I thought I would have no idea what to do and accidentally mess up. Luckily, training and preparing with the CF Foundation helped to calm those nerves, and by the time I had finished my first meeting, they had disappeared entirely. Throughout that first meeting, I realized how much I actually knew about my story and our policy ask. I realized the congressional staff member I was meeting with cared what I had to say. I left Teen Advocacy Day that year with a new sense of confidence that I carried for the rest of high school and into college. I found public speaking easier and even had the confidence to get more involved in my local chapter of the Foundation. After coming home, I quickly started volunteering at other events and doing whatever I could to advocate more. I even ended up changing my future career plans — I went from pursuing a degree in education to pursuing one in communications. I’m so grateful advocacy opened my eyes to what I’m capable of.

— Brooklyn Klein, sibling of a person with CF


Sydney Willis smiling in front of a staircase in a formal gown

When I started advocating, I learned how to share my story more on social media. Prior to Teen Advocacy Day, I would only share my story with my friends. But I learned how you can use your story to share the ups and downs of your CF journey. This gave me the confidence to start my own Instagram page sharing the good and bad parts of my CF journey for all to see. I want to be able to educate people about the struggles people with CF go through, from being in the hospital to celebrating a good doctor's appointment. Advocacy also gave me the confidence to share my current CF college athletic journey. Starting to share my story has allowed me to encourage other CF fighters to do anything we put our minds to. I am so thankful advocating allowed me to learn how to start sharing my story and start my social media journey with CF! 

— Sydney Willig, young adult with CF
 

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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Katherine Black is from Royersford, Pa. and her older sister, Lauren, has cystic fibrosis. Katherine has participated in Teen Advocacy Day every June from 2017-2023 and was an intern for the program in 2024. She has also been involved in many CF fundraisers and participates in Great Strides every year. You can find more about Katherine’s advocacy on her Instagram.

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