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LACE UP. WALK. CURE CYSTIC FIBROSIS.

Great Strides, Great Stories

Great Strides is the Cystic Fibrosis Foundation’s largest national fundraiser. Every year, families, donors and friends take steps to help support the search for a cure. In this section, we’ll feature a special person or team who played an integral role in the Great Strides walks. We hope you’ll find this story to be inspiring as we continue to make Great Strides in our efforts to find a cure for CF!

You Use Everything You Have in Your Arsenal

Team: Paul's Patrol, since 2015/ Team Leader: Stephanie Scott

My son Paul was diagnosed with cystic fibrosis at two weeks old. At the time, my husband and I didn’t even know we were carriers of the defective CF gene. It’s a day I will never forget, the single most devastating day of our lives.

Supporting our precious son in a battle against this awful disease has been a difficult journey. Paul had his first lung infection at 10 weeks old. Paul’s first lung CT scan found that his lungs were severely diseased and our pulmonologist said, with tears in his eyes, that Paul might have to go on a lung transplant list at only 11 months old if things didn’t improve quickly. For nearly two years, we had to do four treatments a day and Paul was hospitalized several times. Luckily, we have not yet had to have Paul undergo lung transplantation and we have seen significant improvement in Paul’s health. Yet, every day poses its own challenges and the earliest years of Paul’s life were difficult.

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As we struggled to adjust to our “new normal,” it felt impossible to get involved with the Cystic Fibrosis Foundation given how much we were already taking on each day in the battle against CF. Where would we find the time and the energy? But, eventually, we realized we couldn’t just stand by and watch as others supported the Foundation -- we too would do our part to help find a cure. That’s why we created our team, Paul’s Patrol.

In just two years we’ve raised $70,000 by participating in Great Strides, and our team is always growing. I’m constantly touched by the people who donate to Paul’s Patrol, both friends and family. And, I’m honored to say, some donors are people who have never met Paul.

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Almost every day, I share Paul’s story on Facebook and Instagram. My goal is to show people about life with CF and to spread awareness. I show the trials of our everyday life and also celebrate our successes, highlighting the normal “kid stuff” that fills our days. On Facebook, I tell Paul’s story through his eyes -- I write as if I’m Paul and I explain CF, and life, like Paul would. Through Instagram, I tell Paul’s story from my vantage point as his mom. And through both channels, I connect with and engage our donors to support Great Strides and the Foundation.

Paul’s Patrol is successful because we are incredibly focused when we ask for donations and how we support our teammates. We created a campaign, Kids Fundraising for Kids, and pages for some of Paul’s friends, who -- in their own voices -- told donors why they love Paul and encouraged readers to make a difference in the lives of people with CF.

Most important to me, every year after Great Strides, I thank each and every donor who has contributed to one of Paul’s Patrol’s 120 striders. Our family wants everyone to know that the contributions of the more than 500 donors who supported Paul’s Patrol help add tomorrows for people with CF. As parents, we are so grateful.

We started Paul’s Patrol because when you have a child with CF, you use everything you have in your arsenal and for us, Great Strides is part of our arsenal. CF sneaks up on you when you least expect it but as a parent, it’s my job to do everything I can to keep Paul healthy. It’s really my job to ensure that Paul not just outlives us, but experiences a high-quality, healthy, fulfilling life. That’s why Great Strides is so meaningful to us: it helps add tomorrows for Paul.

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Meet Stephanie Scott, Paul’s Patrol Team Leader

Stephanie’s son, Paul, was diagnosed with CF at two weeks old. Stephanie remembers that day as the single most devastating day. Read more about Paul, his fight against CF and why Paul’s Patrol strides for CF. 

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