I first met Margarete Cassalina when we were hosted for dinner by Bob Emmelkamp at the North American Cystic Fibrosis Conference (NACFC). We connected immediately. There was an ease to our conversation, a shared understanding that doesn’t require much explanation in the cystic fibrosis community.
And I have to say, her husband Marc is just as wonderful. They are the kind of people you feel grateful to know. I’m so glad we are in this CF life together.
Margarete is an author, speaker, and longtime advocate and fundraiser for the Cystic Fibrosis Foundation. But long before the stages, the fundraising events, and the national advocacy, she was a mom navigating the daily realities of cystic fibrosis.
In 2006, her 13-year-old daughter, Jena, died from CF.
In the depths of unimaginable grief, Margarete made a powerful decision: she would honor Jena’s life not only with love, but with action. Since then, she has dedicated herself to storytelling, advocacy, fundraising, and speaking across the country about resilience, motherhood, loss, and the urgent need for continued research.
Margarete’s son, Eric, also lives with CF, and in this episode you’ll hear more about how he’s doing and what life looks like for their family today.
This dynamic, incredible woman will inspire you. Her story is not only about loss it’s about purpose. It’s about choosing to move forward when standing still might feel easier. And it’s about doing great things in the name of someone you love.
To find her books go to Amazon.
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