Grace Knight

Grace Knight turned her greatest enemy into her greatest friend. As an infant, she was diagnosed with cystic fibrosis, a genetic disease that affects the lungs and digestive system. But she didn’t let that stop her: The disease inspired her to advocate and find a cure. In high school, she served more than 500 hours with the Cystic Fibrosis Foundation and organized the annual Great Strides Walk. Grace has raised more than $1.6 million for cystic fibrosis research. She has also collected poems from cystic fibrosis patients and published them in a book called “The Tangles of Life,” which won the Girl Scout Gold Award. Despite facing obstacles in her life, Grace has persevered to increase awareness about cystic fibrosis while always sharing her positive, thoughtful POV with the world.

Age: 19
College: University of Pennsylvania
Majors: English
Expected Graduation: Spring 2020
Book Site, Website, Facebook

What do you consider your greatest achievement to date?

I am extremely proud of the community my family and I have built in our hometown. I am amazed that my high school sees cystic fibrosis as one of their main charities and they continue to support my team, even though I have graduated. I am so humbled to have been able to share my story within my community and to have so many people be receptive to my struggle and need.

When I was born, my parents did not know what CF was, nor did we have a CF walk in my hometown, Tyler, Texas. Now, there are multiple fundraising events that happen each year including the CF Walk, Gala, golf tournament and fishing tournament. At my high school, the entire week of the walk is spent selling t-shirts, collecting change and (our newest addition) selling desserts. Throughout my entire life, I have raised over $1.6 million dollars for CF research. This is my greatest achievement, taking a community that was unaware of a need and turning it into a place where we all rally together under this one cause.

What is the hardest part of having cystic fibrosis while in college?

The hardest part of having CF in college is staying on top of everything, but still having fun. There are a lot of things that I have to do that a normal college student does not, such as ordering my medicines each month, doing breathing treatments daily, staying active through exercise, eating enough healthy calories and going to doctors appointments.

Each one of these is not too bad, but together they take up a major portion of my life. Because of this, priorities are extremely important. I have to put my health first always, which is hard to do when all I really want is to have fun and get a good education.

How did/do you advocate for cystic fibrosis patients in both high school and college?

I was diagnosed with CF when I was one and a half, and ever since then I have fought for a cure. When I was younger, my mom would take me around to people in my community and we would ask them to give money to our cause. Once I started sixth grade, I knew it was time to take fundraising into my own hands. I began to rally my school around my walk team and each year the turnout at the walk grew.

In order to keep people engaged, I began making t-shirts and videos, giving speeches, having change drives and writing thank-yous. I loved seeing my friends come together under this one cause. I also think that sharing my story is an important part of helping people understand why this cause is so vital, so I began to speak at local CF events. I have been on TV and in the paper, helping spread the word about this disease. I just try to do everything I can to make people aware of what CF is and how they can get involved.  

“I also think that sharing my story is an important part of helping people understand why this cause is so vital...”

Why has your cystic fibrosis been both your "greatest friend and worst enemy"?

CF is a horrible disease that has taken a lot from me, including my breath. However, it is because of CF that I am able to inspire others and bring people together. Through this disease, I have become a stronger person and I have been able to help others. Yes, I want a cure desperately, but I am thankful for the opportunity I have been given to use my struggle to create change.

What advice do you have for other students who want to raise money and advocate for an important cause?

If you have a passion for something, nothing will stop you. People are receptive to other people who have a purpose and are passionate about what they do. For me, it was especially helpful to start small and then build up the campaign each year. Don’t try to go all out the first year. Take some time to finesse what you want to do and what people respond to best. A lot of fundraising comes down to trial and error.

“I am thankful for the opportunity I have been given to use my struggle to create change.”

Why did you want to compile the book “The Tangles of Life” and how did you make it happen when you were still in high school?

A little-known fact about people with CF is that they are unable to communicate with each other face-to-face, because of the risk of cross-contamination. This means that as a community, we are torn apart. Of course there is always social media, but nothing compares to a comforting hug or connecting to someone in person. I decided to try to help mend this gap in our communication through poetry.

I have always seen poetry as a connection to the human soul and could not think of a better way for the CF community to share with each other. I worked with a local company to help build a website where people could submit poems, and I contacted everyone I knew within the CF community to help me get the word out. By the end of the project, I had received over 70 poems and was amazed to find I even received a couple from a girl in Ireland. After reading each poem, I felt inspired to keep fighting my disease and was left with the hope that I was not fighting alone. I consider this book as one of my most treasured possessions.

Creating this book during high school was definitely hard, but I had a lot of help. My mom was and always is my biggest advocate, and she would always help me stay focused and moving while I was doing the project. I worked mainly with people I knew locally, and they were exceptionally generous with their time and help. The Cystic Fibrosis Foundation gave me valuable contacts for spreading the word and allowed me to connect with people from around the world. Also, many of my friends submitted poems to my book and encouraged me along the way. It was because of this support that I was able to put into action my idea and ultimately complete it.

Why do you want to become a lawyer after graduation?

Through CF, I have learned the importance of advocacy and speaking out for others. I want to become a lawyer so I can continue to be an advocate for others and help people who cannot speak for themselves. So many people have stood up for me and advocated in my honor that I want to give back to the world in their name. I also really love reading and writing, and through law, I can do those things every day.

What inspires you to keep fighting against such a draining disease?

My family and the fact that I have so much more I want to do with my life besides CF. Sometimes it needs to be the sole focus of my life, but when I am healthy, I have a life just like anyone else. There is so much more to live for than this disease and I refuse to let it hold me back. My family has always had my back, and they support me when I am healthy and when I am sick. I see in their eyes the belief that I can beat this disease and so I know I can.

Also, there is now so much hope for the entire CF community. There are new drugs coming through the pipeline that are working to fix the genetic cause of CF, instead of just the symptoms. There has never been a better time to fight this disease than now. I truly believe we will have a cure soon.