This feature focuses on a special person or team who played an integral role in the 2012 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!
Sharon and Jason DeLorenzo – DeLorenzo Dashers
Walk: Houston, TX
Chapter: Gulf Coast Chapter
Team: DeLorenzo Dashers led by Sharon and Jason DeLorenzo and their children Sophia, 11, who has CF; Jack, 9, who has CF; Grant, 4; and Paige, 2.
Impact: Raised more than $230,000 in 2012
Why I Walk
The DeLorenzo family has been participating in Great Strides for more than ten years and raised $230,000 in 2012. Sharon, mother of Sophia, 11, and Jack, 9, is thankful for treatments that allow her children to participate in sports and maintain strong friendships with peers.
I walk in Great Strides so my children and nephew can live healthy lives.
Sophia, my oldest, was five weeks old when she was diagnosed. She hadn’t gained any weight since she was born so we knew something wasn’t right. The doctor ran tests and the sweat test came back positive. The diagnosis was actually a blessing — it meant we could help her.
Jack was diagnosed via ultrasound when I was six months pregnant with him. We also have two other children who do not have CF.
Around the time that Sophia was diagnosed, my nephew, now 15, was showing symptoms. The family finally put two and two together and had him tested. He was diagnosed with CF a week after my daughter.
How We Fundraise
When Sophia was six months old, we launched DeLorenzo’s Dashers with a letter-writing campaign. I’ve been writing letters ever since.
Writing those annual letters is one way we deal with CF. The letter gives us an opportunity to describe a part of our life that other people don’t always see. For me, it’s very therapeutic.
The letters also let people know what our kids are able to accomplish in spite of their diagnosis. We show people that kids with this disease really can live normal lives. We also try to educate people about CF and often include information about new treatments.
What We’re Thankful For
Sophia and Jack don’t see CF as a challenge. They are able to keep up with their friends and do the things kids do, like participate in sports and see friends. I’m so thankful that they are able to live relatively normal lives. You cannot see that they are different — and that’s due to the new medications and treatments that keep their lungs clear.
Tips for Other Great Strides Teams
People don’t understand this disease and they want to know why they should donate. Parents need to educate people about your child and specifically how drugs can improve your child’s life. Telling that story and making it personal makes a difference.
My dream is for a medication, like Kalydeco, to be available for my children and all children with CF.
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