Discovering the Power of Advocacy

Advocacy is impactful at all ages, but the term can sound intimidating. It implies effort, time, commitment, politics, and publicity. As a 30-year-old with cystic fibrosis, I am currently an active member of the CF community, but I was not always aware of the benefits, power, and impact of advocacy.

June 15, 2023 | 6 min read
Nicole-Kohr-Headshot
Nicole Kohr
Nicole Kohr smiling and holding a stage light above her head like a spotlight

When I was diagnosed with cystic fibrosis at age 5, my mother was my only tie to advocacy. My family participated in the Great Strides walk in Franklin Township, N.J. Then in 2000, my entire second grade class joined my Great Strides team, Team Nicole. The awareness only spread from there. Get well cards wallpapered my isolated hospital rooms. Each PICC line cover was decorated with the autographs of my classmates. Friends would visit me in the hospital. 

But as I aged into my pre-teens, this awareness seemed more like a detriment. The appearance of get well cards diminished. Those that did appear were misspelled and seemingly forced by the instruction of my teachers. New friends did not have the life experience to endure my baggage, and teenage boys weren’t in the market for a coughing, smelly, sweaty, and frequently hospitalized person. I didn’t want special treatment from teachers, nor did I want to be discriminated against in my community theater auditions. I craved normalcy and popularity, so I began to retreat from all labels associated with being “sick girl.” I made the decision to keep my disease a secret.

By the time I reached high school, this mask I’d crafted at age 10 was hard to take off. I had one friend with cystic fibrosis. He’d frequent my doorway (being mindful of infection prevention guidelines) when we were both admitted for a tune up. Even his visits, unfortunately, were a rare occasion. Eventually, I friended three CF patients on Facebook — at the time, a brand-new social media platform. I was comforted by photos of them taking enzymes, but not much else. They were more forthcoming about their CF, pushing fundraisers, infographics, and awareness ribbons. I wasn’t comfortable with that approach or level of vulnerability … yet.

In March 2019, my lack of advocacy was apparent in the void I’d created. My health was declining quickly, and I was being evaluated for a bilateral lung transplant. My mother, then-fiancé, and I needed a stronger support system, but the years of masking resulted in no community. This is when I reached out to the Cystic Fibrosis Foundation and asked for a line of support. In addition, I told my mom to share my story on social media. Immediately post-surgery, my mom shared a photo of us in the pre-op room with the caption that I requested: “I got my new lungs last night! My wedding thank you notes might be a little late.” Hundreds of people liked my post, sent a message, and donated to the cause. I didn’t realize the impact one vulnerable post could have on my life and on the community. I didn’t realize how much I’d missed out on during my time as a teen and young adult.

I have learned that the benefits of speaking out outweigh any fears I had about my reputation. Presently, I am the Volunteer Engagement Chair for the Central/Eastern Carolina’s chapter. I am a two-time CF Star Award winner and the recipient of four Cystic Fibrosis Foundation grant awards for my original musical, “Fall Risk.” I have spoken at two Great Strides events and hosted another two virtually. I am a congressional captain for my chapter and use my story as a tool to advocate for bills like The PASTEUR Act during March on the Hill. I am the founder of Colie Creations Inc, a 501c3 nonprofit whose mission is to advocate for patients through storytelling. Through it, I publish children’s books, blogs, and music.

Looking back, I always had the power to advocate. It’s easy to rally around a child in need, so why did I shy away from engaging my juvenile peers? As a teen, my time and knowledge of social media were my greatest assets. Why wasn’t I a warrior of inclusion and accessibility? As a young adult, I should have accepted the fact that endurance takes a village. I should have reached out to others sooner. I could have benefitted from my current network of peers, advocates, and clinicians, many of whom have walked in my shoes.

Advocacy does not require confidence, commitment, or salesmanship. Advocacy does not require “a very sick and well-versed patient.” You don’t need a connection to cystic fibrosis at all. Advocacy just requires the authentic you.
 

Become a master of narrating your own experience. Then you will benefit from the power and impact of advocacy sooner than I did. 

There are so many ways you can speak out. Start a conversation about CF. Create a cookie fundraiser. Choose CF as a topic for your science project. Create a blog post or a podcast to tell your story. Write letters to your representative. Take a survey. Write an article or share an existing article. Join a panel or an email subscription. Host a conversation over Zoom. Share a post on Facebook or Instagram. Get in touch with your local CF Foundation chapter and see what opportunities they have. Make lasting friendships. Follow CF patients, organizations, and advocates on social media. Give yourself a place where you can vent and share. Give yourself the resources to cope. Dress your oxygen tank like a flower girl, then post about your transplant on social media. There is no right or wrong way to advocate, nor is there a wrong age to advocate. 

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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Nicole-Kohr-Headshot

Nicole is the writer and executive producer of Fall Risk, a new musical comedy about cystic fibrosis. She is a public relations graduate from Kean University, and certified in the theory and practice of Child Life from UCLA. She also authored a children's book called Two Cents, which is based on her experiences with critique related to CF. Nicole is proud to be an AbbVie scholarship winner and WEGO health award finalist. Nicole is an Impact Grant recipient, a patient representative for the Robert Wood Johnson Adult Cystic Fibrosis Clinic, a Regional Lung Transplant Conference patient representative, and public speaker. Nicole lives in New Jersey with her husband, mother, and twin puppies. You can follow Nicole on Twitter @cystic4real, on Instagram @sigurn1, or on Facebook. You can also email her at fallriskmusical@gmail.com.

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