When my daughter Piper was diagnosed with CF at the age of four, I experienced a seismic shift in consciousness that began with a dark night of the soul, launched me into a journey across an ocean and birthed me into a community of individuals whose light, courage and love have inspired me to advocate with a passion as eternal as my love for Piper. I consider it an honor to bear witness to the lives and legacies of every CF Warrior. They have been my greatest teachers. 

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My journey with cystic fibrosis is long term and bittersweet because for as many times as it breaks my heart, it breaks it open and forces me to fill it with more love and more light. I’ve held my daughter’s frail eight-year-old body while she cried because her “lungs burned” and I marveled at the delight and wonder in her face as she surfed her first wave. Life experienced in contrasts like these has shown me just how deep my gratitude runs—gratitude for every breath, every sunset, every wave, and every beautiful human fighting to shine their light against CF odds. 

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As a newly diagnosed CF parent, I found my purpose in the expression of my dedication to Piper and the community we had just become a part of. This is how I founded Piper’s Angels Foundation and created the Crossing for Cystic Fibrosis, an 80-mile paddle challenge from the Bahamas to Florida. I wanted to do something that showed the depths of my commitment to honoring their fight, something that would get people’s attention and put CF and it’s warriors in the spotlight so that the world would see what I saw: love and life persisting, even through the darkest of nights.

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I am proud to be part of a CF family. My sister LeeAnn, diagnosed at age 40 with CF after losing part of her lung, persevered undiagnosed and untreated for the first half of her life. I am proud to share my CF family with the world and with so many amazing individuals who sign up to advocate with Piper’s Angels and to fundraise and paddle an 80-mile ocean crossing. They are signing up for lessons in love and gratitude and purpose that I’ve seen transform lives. 

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But I am most honored to be a part of all CF families, to wake up every day and make it my purpose to learn from them and to teach what I learn: that life is a dance with energy, an opportunity to experience our power to create, and that we can transform our pain into light, our grief into beauty, and our breath into song.  Thanks to this incredible community, Piper’s Angels Foundation continues to grow into one of the most impactful grassroots organizations for cystic fibrosis.