Each month through the end of the year,
we'll feature 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!
Claire Nezezon,
3, was diagnosed with CF at 2 weeks old and is the inspiration behind Team
Claire. The Great Strides team recently partnered with the St. Lawrence
University Center for Civic Engagement to hold a fundraising Zumba-thon in
Claire's honor. The event raised $6,000 to help support the search for a
cure.
Walk: Ogdensburg - 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 $20,833 so far 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.
Claire Nezezon,
3, helps cut the ribbon to start the 2013 Ogdensburg - Dobisky Center Great
Strides Walk in Ogdensburg, NY. Team Claire raised more than $20,000 to help
support the mission of the CF Foundation.
Advice for Other
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.
My Dream
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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