"Beyond the CF Girl" by Elena Goodrow

CF advocacy plays a key role in CF Awareness Month. Advocacy helps the general public gain knowledge about CF, it helps our community be more understood. It helps individuals living with CF become more confident in their ability to make decisions for their health and express their views to others if they choose to do so. It helps people feel encouraged to donate to nonprofits supporting those with CF, which has a major impact on the lives of CF individuals. individuals living with CF across the world rely on non-profits for financial assistance, community connection, grants of all kinds, scholarships, educational resources, and so much more. 

CF advocacy has been a part of my life since I was born, I’ve dedicated my life to it and that has impacted me in several ways. I began participating in CF fundraising events when I was just 2 years old. My family hosted a golf tournament called Elena’s Golf Classic. I rode around the crowd in a small toy golf cart, interacting with people regarding my CF. Because of how much I was speaking to adults, I could speak full sentences and carry a whole conversation at just 2 years old. This catapulted me into a life of public speaking and using that to my advantage within the world of CF advocacy. I realize not every child with CF was able to get in front of crowds consisting of hundreds of people, but since I was able to do that I imagine I felt it was my duty to speak for my community. Looking back, I imagine my tiny stature could feel such a heavy weight on my shoulders, but nonetheless it fueled this passion and responsibility for advocacy that I carry with me still to this day. 

When I was 5 years old, I started my own running team called Rosebuds. I would be watching my Mom run so many CF fundraisers with a running team called 65 Roses, and I thought there should be something like that for kids. If all the adults can raise money for a good cause, why can’t the kids do the same thing? So, Rosebuds was born. My mom helped me with all the logistics and at just 5 years old I was having brainstorming sessions and planning out the event with a team of people. I absolutely loved getting a bunch of kids together at these events and educating them about CF - hoping they would all feel empowered to fight for our community. 

In between hosting Rosebuds events I would speak at fundraisers such as auctions, galas, private dinners, and more. Looking back, it’s hard to imagine such a small child writing speeches, share my CF story, talk about CF so fluently, and ultimately why donating to this cause was so important.

It became a familiar routine in my life.

I would get a new dress to wear to a black tie event. I would get up and speak to 100-400 people like it was a normal everyday conversation. Then after my speech I would walk around and mingle in order to continue the conversation encouraging people to donate. While I did have a strong passion for public speaking, the idea of asking for donations was difficult to wrap my young mind around. Money is a difficult concept for adults to grasp let alone a young child and had to figure out how to approach the topic.
At these events I would always be told things like:

”You’re so mature for your age!”
“You are helping so many people, Elena! Keep it up!”
“You’re so strong, don’t stop fighting.”
“You looked so pretty on stage, Elena! Where can I donate?”

These people wanted to support me and encourage me, which I’m so thankful for. However, hearing all of these different forms of validation started to shift my perspective on why I was doing these events. I began relying on that external validation rather than my own internal gratification. I wanted to support my community and fundraise for them, but at the same time I felt like my self-worth was tied to the dollar amount I was silently charged to raise. This spiraled into an unhealthy mindset I am still trying to break free from. I thought if I wasn’t being an advocate in every sense of the word, I wasn’t fulfilling my purpose. 

The years went on and I raised approximately over $300,000 for the CF community. I even spoke to all the government officials in the Georgia State Senate in honor of CF Awareness Month. I was just 9 years old. After about 8 years of consistently hosting Rosebud races and traveling around the state to speak about CF, I was ready for a change. I had so many ideas for ways we could help Rosebuds grow.

It was during this time of Rosebuds I was also discovering my passion for music. I wanted to expand my events to include not just races but also concerts. I wanted to do obstacle courses, dance parties, sing-alongs, and more. I wanted to create events that everyone could enjoy, not just runners. My Mom and I brainstormed and came up with a list full of ideas, and we brought it to the nonprofit we had been working with all those years. Unfortunately, those changes and the growth I envisioned for Rosebuds weren’t meant to be and ultimately this would be the catalyst I unknowingly needed to find myself. To be honest, I was absolutely crushed with letting go the Rosebuds chapter of my life. If I wasn’t hosting Rosebuds events, I wasn’t fulfilling my purpose. My self worth and my perceived identity were suddenly set to a different narrative. One I didn’t recognize or understand . I didn’t know how I could possibly move on from this heartbreak. Nonetheless, I found a way and it was exactly what I needed to find myself.

I knew I wanted to host a music event, and I had a few friends that were on board with helping me. When I was 15 I founded Salt Fest. It was a benefit concert consisting of local teenage musicians fundraising for CF. Throughout all my years in CF advocacy, I had never truly felt like I was doing what I was meant to do until I hosted Salt Fest. I was only able to host Salt Fest once until the pandemic started, but the pandemic allowed me to have a much needed break from the non-stop advocating I had been doing my entire life. I finally recognized how much I was relying on advocacy and validation to fulfill my own self-worth. I noticed that without advocacy I felt like I had no purpose in life. I started using my time writing songs instead of speeches. I released an EP and started putting myself out there more. Even though I had been speaking to huge crowds my whole life, I didn’t share who I truly am. I just talked about my illness. I started doing therapy, I spent my time practicing being vulnerable and trying to find who I was beyond “the CF girl.” 

Now I am 19, and after 4 years of this introspective work I have discovered my path to building a healthy mindset. I love advocating and educating people on CF, but I know that is not where my worth lies. Advocacy doesn’t have to mean fundraising. I can live a life rooted in advocacy while still making time for myself. I can host music events that celebrate a community I belong to and believe in. I have the power to stand up for myself. I have the power to make the right choice for who I am and advocate not only for others but myself as well. I have the power to connect with my community. I have the power and permission to simply be me.

That is advocacy, that is what I stand for. 

I’m getting ready to host Salt Fest again this year. If you know anyone near the North Georgia area feel free to share this link with them: linktr.ee/saltfest

I’m so excited to be able to host an event for the first time since the pandemic and I’m even more excited to do it in a way that makes me feel happy and fulfilled while connecting to a community that I care so deeply about. I have had quite the journey in CF advocacy, as I am certain so many of you have as well. I’m thankful for everything it has taught me. I’ve met so many incredible people, been a part of so many impactful events, supported a community I believe in, and I believe I made a real difference in my own way.

Advocacy can look different for everyone. I encourage you to find the way that works best for you.

Below is a video of a new song that I wrote about my work in the world of CF advocacy, “This song is brought to you by the letter E”.

***”Breathing Space” is an open and accepting space for individuals to share their personal experience and reflections. Opinions shared and expressed are that of the individual writer and do not reflect that of the entire represented community or Breathe Bravely. We read, share, and converse with grace.

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