Tell Your CF Story at Teen Advocacy Day

I never realized how important it was to share my family's story of cystic fibrosis until I started participating in Teen Advocacy Day. This experience helped me find my voice.

| 3 min read
Michaela Myerson

“Why does a physical therapist come to your house to treat your brothers?” I remember hearing that question from my friends as a little girl.

“They have cystic fibrosis,” I would explain. “It's a disease that affects their lungs, so they need therapy.”

As families of people with CF know, explaining the disease and its impacts are a part of our daily lives. We may not realize, however, how important it is that we share our story.

In June 2010, I turned 12. Less than one month later, I attended my first meetings with the U.S. senators and representatives who represented Massachusetts as a part of the Cystic Fibrosis Foundation's Teen Advocacy Day.

Naturally, I was nervous at these first meetings, but I soon realized that talking to a member of Congress about my experiences with CF was no different than explaining it to one of my friends. In my meetings, I shared my story and my connection to CF, explained how CF affects my brothers, and discussed what Congress could do to better their lives.

Every year that followed, I looked forward to June when I would return to Capitol Hill for more meetings. As the years went on, I became more comfortable in my meetings and -- when I returned home -- I was eager to go back.

Every year, Teen Advocates take a photo on the Capital steps. My first year, we only filled up half of a step! By my fourth year, the steps were crowded!

My trip to Washington, D.C., for Teen Advocacy Day quickly became my favorite week of the year. I loved seeing the impact of my CF story as we continued to share our experiences and influence legislation. Additionally, I found a great sense of comfort in the support system I had when I was surrounded by other teens who understood what it was like to be part of a CF family.

After five years of attending as a volunteer advocate, I will be returning this year as a Teen Advocacy Day intern. I can't wait!

Each year, Teen Advocacy Day has different policy priorities that we discuss with our members of Congress on behalf of the CF community. This year, we will be discussing:

Having seen firsthand what quality health care means to people living with CF, we'll be giving our members of Congress our unique perspective on why people with CF and other chronic diseases need to be considered in any reforms. I am proud to give a voice to my brothers and the other members of the CF community.

To those who are thinking about participating in CF advocacy, I say, do it! Leave your comfort zone and take the opportunity to educate your representatives about things that they can do to improve your loved one's lives.

Teen Advocacy Day has helped me find my voice. I urge all CF family members to find theirs as well, because our voices can make big changes for our community and our country.

See you at Teen Advocacy Day!

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Michaela is a sister to two brothers, Justin and Ross, who have cystic fibrosis. She has been a teen advocate for five years and a March-on-the-Hill participant for two years. This year, Michaela worked as a public policy intern for the Cystic Fibrosis Foundation in Bethesda, Md., and is studying biochemistry at The George Washington University (GW) in Washington, D.C. She hopes to earn a doctorate in pharmacy. Fun fact: Michaela became interested in GW after passing through it every year on her way to advocate on Capitol Hill.

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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.