Great Strides, Great Stories
Each story in this series features a special person or team who played an integral role in the 2013 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!
Jessica Nezezon – Team Claire
Walk: Dobisky Center Walk in Ogdensburg, NY
Chapter: Central New York Chapter, Syracuse
Team: Team Claire led by Jessica Nezezon, her husband Kris, son Cory, 13, and daughter, Claire, 3, who has cystic fibrosis.
Impact: Raised over $21,000 in 2013
Why We Walk
Claire was diagnosed when she was 2 weeks old through the newborn screening. My husband and I were completely devastated. We didn’t know a lot about CF. I told myself I had to be strong for Claire. My family and I are willing to do whatever we have to do to keep her healthy.
The doctor gave us a lot of helpful information, but through my own research, I came across Great Strides. We live in a rural area, so I was expecting to have to travel to attend a walk. I was so surprised to learn that a walk was already established near us, in Ogdensburg. I registered for the walk that day.
How We Fundraise
Like most Great Strides teams, our fundraising started small, but we kept going. One thing led to another and we got involved with the St. Lawrence University Center for Civic Engagement. They held a Zumba-thon called Kick it for Claire. The entire community was involved, including athletic teams and sororities from St. Lawrence University and other area schools.
The event raised $6,000 and Claire got to participate. She got right up on stage and did Zumba with everyone. It was a great day for her.
Advice for Other Great Strides Teams
Social media is an amazing resource that I would encourage everyone to use. The Facebook application on the Great Strides site is especially helpful. It allows you to reach out to a large audience quickly and easily. I’ve been able to connect with friends from high school and college, old neighbors, and extended family — people I might not have the ability to reach any other way. I’ve found that people are extremely excited to get involved. Everyone wants to help find a cure for Claire and for all people with CF.
What We're Thankful For
The cystic fibrosis community has become a source of inspiration for me. The Central New York Chapter of the Cystic Fibrosis Foundation is like family. Anytime I need anything or have a question, they never hesitate to help. I’m also so thankful for the people at the Pediatric Pulmonary Center at Update University Hospital in Syracuse. I couldn’t ask for a better group of nurses and advocates. Claire actually looks forward to her appointments.
I want Claire to live a long life and have the ability to follow her dreams. I think she’s going to bring a lot of hope and positivity to people. She’s only 3, but she doesn’t let CF hold her back and I don’t think she ever will.
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Great Strides, Great Stories
Team Claire raised more than $21,000 in 2013 to help support the Foundation’s mission.
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