On the eve of Madison’s 21st birthday, we find ourselves reflecting on where we’ve been — and how far we’ve come. I was reminded tonight by Ryan that when Madison was just two years old, she was denied life insurance due to the grim outlook of her diagnosis. And yet, here we are. Madison is turning 21 — a milestone we never dared to imagine back then.

Today, I ran in what Madison calls her “Gratitude Run,” where she goes through the alphabet, naming things she’s grateful for. And on this birthday, at the top of my list is the Cystic Fibrosis Foundation — and you, our incredible community of supporters. You have helped make this birthday not just possible, but profoundly sweet.

This year, my passion for fundraising was reignited for several reasons:

First, we were honored to be featured in Ellen Krohne’s book, Living with Hope. Ellen, an Okawville native, is chronicling the lives of people who found light in the face of chronic illness. Sharing our story — and reading others’ — reminded us how far we've come and how deeply supported we’ve been.

Second, our family read Breath from Salt, a brilliant book by Bijal Trivedi that tells the story of the CF community and the scientific breakthroughs that changed everything. Ryan once dreamed that Madison would write a similar book. This one captured it all — the heartbreak, the relentless dedication, and the triumphs.

Finally, perhaps most powerfully, Madison pursued — and landed — an internship at Vertex Pharmaceuticals, the company behind her life-saving medication. She was relentless, certain no one else could bring her combination of personal experience, passion, and education in biomedical engineering. After connecting with the director of the CF Foundation, she found her way to the right people at Vertex. And they agreed — she was the right person. This summer, Madison will be working for the very company that gave her back her future.

As a mom, I could not be more proud.

We have three children, and each one has played a role in this journey. Brady — always watching, always caring. Logan — full of life, endlessly loyal. But of course, so much of our focus has been on Madison. Her early years were full of uncertainty, and her path has not been easy. But she has transformed her challenges into purpose. She’s not just surviving — she’s thriving, giving back, and determined to improve the lives of others through science and innovation.

This year, I’m taking a break from the Xtreme Hike for CF because I’ve been given the honor of running the BMW Berlin Marathon on behalf of the Cystic Fibrosis Foundation. My goal is to make this a record-breaking fundraising year. In a time when uncertainty seems to surround us, one thing remains constant: the CF Foundation’s unwavering mission to find a cure — and their track record is nothing short of extraordinary.

The breakthroughs made by the Foundation and Vertex in gene therapy and rapid drug development are changing lives, not just for those with CF, but for many other genetic diseases as well. It’s a cause worth every dollar, every step, and every ounce of energy we can give.

If you would like to support this mission and celebrate Madison’s 21st birthday with us, donations can be made in two ways:

Online: Alicia Luechtefeld’s Berlin Marathon fundraising page
By mail: Checks made payable to Cystic Fibrosis Foundation can be sent to:
1450 Gambier Terrace Court, O’Fallon, IL 62269

With deep gratitude,
Alicia Luechtefeld