We offer an inspirational start to the new year with this installment of Great Strides, Great Stories that features a team from the 2013 walks. We hope you’ll find this story to be uplifting as we continue to make Great Strides in our efforts to find a cure for CF.
Jodi and Bill Squires – Sean’s Pals
Walk: Verona Park, N.J., Great Strides held May 11
Bill Squire’s son, Sean, was diagnosed with CF when he was five. Since that time, Bill and his family have been helping to support the search for a cure through their Great Strides team, Sean’s Pals. “If you focus on the negative, you’ll just get knocked down. Instead, you have to see every challenge as an opportunity to make a difference,” Bill said.
Chapter: Greater New Jersey Chapter
Team: Sean’s Pals, led by Sean, 16, who has CF, siblings Sydney, 14, and Ashley, 29, and parents Bill and Jodi Squires.
Impact: Raised over $226,000 in 2013
Why We Walk
Our son, Sean, was diagnosed with CF when he was 5. We always knew something was wrong, but we just thought it was allergies. When we got the diagnosis, we were in shock. The more we learned about the disease, the more we knew we had to do something.
We contacted the executive director of the Foundation’s Greater New Jersey Chapter and asked what we could do to help. We’ve been fundraising ever since.
How We Fundraise
It’s pretty simple: if you talk to us for five minutes, and you’ve never met us before, you’re going to know our son has CF.
We do a lot of my fundraising through email. We’ve got about 2,000 people on our lists. Once per month they all get an email from us about Sean. We use email to describe what life is like for Sean — we talk about his treatments, hospitalizations, his daily life and stories about those who support our fundraising efforts.
Sean is 16 now and pretty mature for his age. He knows he can help make a difference by talking about his disease. He’s not afraid to get up in front of a group of people and tell his story. Getting people involved is about perseverance and telling stories. You have to make a personal connection.
Advice for Other Teams
If you focus on the negative, you’ll just get knocked down. Instead, you have to see every challenge as an opportunity to make a difference. Always be on the lookout for new ways to attract more people to the cause. Be a fighter, work hard, and never give up.
What We’re Thankful For
The only way we’re going to find a cure is to raise as much money as possible. I know there are a lot of other people out there working just as hard as we are, and we have to say thank you to them. I’m always amazed at how hopeful other CF parents are. They really inspire us to keep going and to never give up.
We want Sean to live a long, healthy, productive life. We’d love to see a day when his only treatment is a pill or two — no more vest, no more machines, no more hospitalizations.
We want people to know that this just isn’t about Sean. This is about every individual with CF. Our job’s not done until we find a cure for every mutation. We hope other parents and other supporters of the Foundation feel that way, too.