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My Great Strides Story

Mike Henry

Fundraising for West Suburban Great Strides

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Mike Henry

Our five-year-old daughter Joanna is bright, funny, creative, and absolutely enchanted by animals—real, extinct, and imaginary. She loves preschool, where she gets to learn about letters, make crafts, and play with her friends. She’s precocious, joyful, and has this way of charming everyone she meets (I'm guessing you're one of the people she's charmed!)


But Joanna also lives with an invisible difference: when she was just a baby, her newborn screening came back positive for cystic fibrosis (CF), and our world changed forever.


Cystic fibrosis is a genetic disease that affects the lungs, pancreas, and other vital organs. It makes it harder to breathe, to digest food, and to fight infections. Over time, it causes serious and permanent damage—often leading to respiratory failure.


Despite all of that, Joanna is a fighter—even if she doesn’t see it that way. For her, it’s just normal life. She takes over 20 pills a day, does two 30-minute breathing treatments daily (more when she’s sick), and visits specialists regularly. As she grows, she’s becoming more involved in her own care—learning to track her symptoms and remember medications. Her resilience humbles me.


CF affects every person differently. While some progress has been made, there’s still so far to go for so many families like ours.


There are incredible CF drugs out there called modulators that have changed lives—but unfortunately, Joanna can't take them due to side effects. We’re incredibly thankful that she’s doing well right now with relatively few signs of disease progression. But she—and so many others—deserve better. They deserve more.


Yes, the life expectancy for kids born with CF has increased in recent years. But as Joanna’s dad, I’ll be honest: 50 or 60 years just isn’t enough.


We need more effective treatments. We need a cure.


Will you help us fight for one?


When you donate to our fundraising goal, you’re helping to fund the research, the science, and the breakthroughs that will bring us closer to a world without cystic fibrosis. A world where kids like Joanna can grow up to live full, healthy lives.


Thank you for standing with us.

—Mike

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The CF Foundation is committed to providing a safe, inclusive, and healthy experience for individuals attending Foundation Events. Individuals attending CF Foundation events must abide by the Foundation's Attendance Policy and accompanying guidelines, which include guidance for event attendee's living with cystic fibrosis.