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Buy All the Hand Sanitizer If You Must, But Don't Forget to LIVE!: My thoughts on coronavirus and Cystic Fibrosis

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On March 4, 2020, I celebrated my 42 nd birthday. That day also seemed to mark the height of the fear of the coronavirus in the U.S. to that point. The news headlines included stories about the shortage of hand sanitizer and medical grade masks. My husband, Steve, who runs a porta potty business (insert laughter here), is required by state regulation to provide hand sanitizer in his units. As I reflected on growing another year older yesterday, I also had multiple discussions with him on where to find large quantities of hand sanitizer. Everywhere is sold out. Steve remarked, “maybe we’ll just make our own!” The sudden vigilance that has gripped our country is not new to me. I have been vigilant since December 4, 2003 when I learned that my first born, 4-month-old son, Alex, has Cystic Fibrosis. What is Cystic Fibrosis? Cystic Fibrosis or CF is a life-shortening, genetic illness that affects, primarily, the lungs, pancreas, and sweat glands. That’s the short definition. The lo
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Thank You Once Again & March on the Hill!

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A couple of months ago, I received an email from Kellie Fleeman, head of the Greater Illinois Chapter of the Cystic Fibrosis Foundation (CFF), who let me know  that they had received another amazing donation in honor of Alex.  We have some very generous patrons out there who must love us very much because over the past few years, they have anonymously given large sums of money to the CFF in Alex’s name. Whoever you are, know that we love you and thank you from the depth of our hearts. Kellie also asked if I’d be interested in attending the Cystic Fibrosis Foundation’s annual March on the Hill in Washington D.C. as a representative of the 16 th district of Illinois. Normally, this type of event would be WAY outside my comfort zone, but strangely enough my initial reaction was an excited YES. After all, sharing knowledge of Cystic Fibrosis and the needs of the CF community is right up my alley. You might even call it my super power. 😉 So in just about 10 days, I’m channeling
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Be a Badass in Every Season! A tribute to my Grandma McLeese

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Recently I came across a conversation on Facebook between two women I met in college whom I’ve always admired and found inspiring. One of them had recently made a life-changing career move, and they were discussing how important it is to be a badass in every season of life . I chuckled when I read it, but I knew what they meant. I began to think of my grandma who had recently fallen, broken her hip, and suffered several mini strokes and a heart attack. I thought about her life and how badass she was in every season. I hope you don’t think it vulgar or flippant of me to call my grandma a Badass. Let me explain: Grandma McLeese was not the kind of grandma who would bake cookies when we came over or give us warm, fuzzy hugs (very often). She was a Registered Nurse, and a woman who made things happen. My Grandma was a Woman of Action.  She was born in 1929, and the stock market crashed later that year. She grew up in the Great Depression on a farm in central Illinois near
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A Thank You & An Update

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January 2016 Great Strides Walk in May As 2015 came to a close, so did our fundraising year for the Cystic Fibrosis Foundation (CFF). With a new baby, Steve’s new business, and the various activities of our day to day lives, I wasn’t sure I could fit fundraising into the mix this past year. I decided to use the CFF’s online tools and, a few days before our Great Strides Walk in May, began a last minute fundraising campaign with the help of Facebook. Once again, I was blown away by the generosity and thoughtfulness of family, friends, acquaintances and complete strangers. Alex’s soccer team also surprised him with a donation at the last soccer match in May. We are humbled and grateful for all your support for Alex and for all those battling to live a normal life with Cystic Fibrosis. Thank you! I just want to take a moment to say that your donation is money well spent. The Cystic Fibrosis Foundation is a phenomenal organization. It was created in 1955 by a group of pa
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A Surprise and a Thank You

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Today I found a surprise waiting in my inbox. The surprise was in the form of an email written by Kellie, who is the Associate Executive Director of the Peoria branch of the Greater Illinois Chapter of the Cystic Fibrosis Foundation. I have known Kellie since I participated in my first Great Strides walk back in 2004 when a great group of friends decided to get together and raise money for Alex and Cystic Fibrosis. They called our team Alex's Angels, and I was so surprised and touched by their compassion, I cried when I found out about it. That was one of the first of many acts of kindness we experienced after Alex was diagnosed. Since that first fundraising experience, I've been amazed and humbled by the generosity of our family, friends and strangers who have donated money repeatedly over the years to help fund research, care centers, and the creation of new drugs--all of which help to better the lives of those living with this disease. And the ultimate hope? A CURE. In m
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