Some stories meet you in the deepest places and still lift you higher. This week, you’ll meet Kate Doerge….wife, mother, builder of community……who turned the unthinkable loss of her daughter, Penny, into a living legacy called Penny’s Flight. What began in a cocoon of love and butterflies has become a national movement of students, families, and friends spreading wings for those living with neurofibromatosis. Kate’s pillars; finding beauty in imperfection, choosing positivity in the face of challenge, and having faith over fear…..these aren’t just slogans; they’re the way she gets up, puts both feet on the floor, and keeps going. You can feel Penny’s light in every word.

If you’ve ever wondered how purpose is born from pain, or how one brave family can transform grief into hope for thousands, this episode is for you. Kate’s story is tender and electric, grounded and soaring….all at once. It will remind you that we always have a choice in how we play the cards we’re dealt, and that a single flutter can change the weather for someone else. Come listen, be moved, and like Penny……leave with a bigger wingspan.

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Penny’s Flight does?

Kate Doerge: Penny’s Flight exists to keep our daughter Penny’s big, beautiful light alive and to change the future for families living with neurofibromatosis (NF). NF is actually the most common genetic condition in the U.S., but it’s also one of the most underfunded. Roughly 1 in 2,500 people are affected, about 150,000 Americans, yet most people have never heard of it. Penny was diagnosed at four months old, and even then we refused to let a diagnosis define her. She lived joyfully for sixteen radiant years.

When Penny passed on November 11th, 2022, our community wrapped us in so much love that my husband and I knew we had to channel that energy into purpose. Within four weeks, we launched Penny’s Flight. Since then, wings have truly spread: we’ve raised close to $6 million, started more than a hundred student-led chapters at high schools and colleges, and rallied teams and towns around “Play for Penny” lacrosse games, “Pucks for Penny” hockey nights, bake sales…..whatever brings people together to shine a light. Our three pillars guide everything: finding beauty in imperfection, choosing positivity in the face of challenge, and having faith over fear. And our mantra, “It’s your wingspan, not your lifespan” is Penny’s message to the world.

Charity Matters: Tell us a little about Growing up? Did you have any role models that inspired you in this work?

Kate Doerge: My role models were my parents from day one. My mom was a dancer and an absolute beam of light….belly dancing, tap, jazzercise……you name it. She taught me how physical strength fuels mental strength and how movement lifts you out of darkness. My dad was a devout Catholic, a former Marine who once studied for the priesthood. From him I learned faith, service, and the belief that there’s something bigger than all of us.

Our home life wasn’t cookie-cutter. My mom might pick me up in leg warmers while other moms wore turtlenecks. We traveled to Haiti and the Dominican Republic in the 1980s, long before “service trips” were common….so I saw early what it meant to help beyond your comfort zone. That shaped me. In my career in PR and fashion, I was always asking, “Where can I make a real impact?” Those seeds of service were planted well before Penny’s diagnosis, and they sprouted the moment we needed them.

Charity Matters: What was the moment you knew you needed to act and start Penny’s Flight?

Kate Doerge: I always return to my father’s advice the night before our wedding: “You will be challenged. It is up to you how you play the cards you’re dealt.” When Penny’s brain tumor, glioblastoma…..accelerated in her last two years, we chose to celebrate her life loudly. During her final week, instead of closing the doors, we opened the windows and invited everyone in. We created what I call a “love cocoon.” There were butterflies everywhere….her sign to us.

After we celebrated her life, my husband and I looked at each other and knew: we have to do something. My background is launching brands; his is finance. Our community was saying, “How can we help?” Four weeks after November 11th, we launched Penny’s Flight. It felt like Penny was our partner in it…..like she was saying, “Keep going.” Even on the day she passed, we took a family walk, got back in the car, turned the ignition, and “Walking on Sunshine”…her song blared from the radio though it hadn’t been on before. That was our first sign: move forward, one step at a time.

Charity Matters: What are your biggest challenges?

Kate Doerge: Grief and logistics don’t take turns. I had two sons, a husband, a home, a community of Penny’s sixteen-year-old friends who had never lost someone, and extended family…..all hurting. I felt a responsibility to lead with light, to model a path that others could follow. Practically, the challenges are familiar to every founder: building infrastructure while building momentum; sustaining funding; making noise in a noisy world. Add to that the complexity of medical research siloed efforts, niche subfields, and the realities of federal funding. Last year, NF’s federal allocation was cut; we went to Capitol Hill and advocated to restore it. It’s back on the bill for review, but advocacy never stops.

And yet the hardest challenge….turning pain into purpose….has also been our greatest teacher. Every day we choose the light. Every day we choose action.

Charity Matters: What fuels you to keep doing this work?

Kate Doerge: Energy can’t be created or destroyed….it transforms. I feel Penny’s energy, and my parents’ too. I feel it in the butterflies, in the serendipities, in the way doors open at the exact moment you need them to. I also feel powered by the next generation. Students reach out constantly: “Can we host a game? A bake sale? Start a chapter?” Watching young people use social media for good….that’s rocket fuel.

Our community fuels me. Media friends like Norah O’Donnell shared our story on CBS within a week of launch, and Oprah Daily invited me to write about “playing the cards you’re dealt.” Brand partners like Veronica Beard, J.McLaughlin, Roller Rabbit asked, “What can we do?” Their platforms amplify NF awareness in ways research labs alone can’t. That collaboration…science, students, storytellers, brands….keeps me going.

Charity Matters: When do you know you have made a difference?

Kate Doerge:Impact shows up as a human story. A mom DM’d us: her four-year-old was just diagnosed with NF; she’d gone down a dark Google rabbit hole. That same day, she opened her mailbox to a J.McLaughlin invite for a Penny’s Flight event and found a different rabbit hole….hope. Months later, she organized a Blackstone Gives Back team, pitched Penny’s Flight, and won $125,000 for NF research. That’s a life changed turning into lives changed.

Another young woman with NF wrote when Roller Rabbit launched their butterfly pajamas for us. She said, “I never thought my favorite brand would support the condition I’ve lived with. I finally feel seen.” That sentence…I feel seen…that is impact.

And then there’s community: our first Penny’s Flight Family Jamboree drew 650 people….blankets on the lawn, kids running, live music on a summer night because Penny loved birthdays. We didn’t just raise funds; we raised each other.

Charity Matters: Tell us what success you have had and what your impact has been? 

Kate Doerge: In two and a half years, we’ve raised close to $6 million, launched 100+ student chapters nationwide, and activated schools and teams through “Play for Penny” and “Pucks for Penny.” We’ve become a marketing engine for NF, partnering with Children’s Tumor Foundation to complement their strong scientific backbone with our storytelling and awareness. We brought leaders together at Cold Spring Harbor Laboratory’s Banbury meeting, a lock-in think tank of global experts because progress accelerates when silos come down.

On the research side, we’re funding work that’s already showing promise. For a disease as heterogeneous as NF, that means convening optic glioma experts next to cognitive researchers, next to tumor biologists, next to data scientists and pushing for shared insights rather than parallel tracks. When we measure impact, we count dollars and chapters and media reach, yes. But we also count new collaborations formed, young advocates trained, and families who no longer feel alone.

Charity Matters: If you could dream any dream for your organization, what would that be?

Kate Doerge: It’s not a dream….I feel it in my bones: we will find a cure for NF. That conviction is why I pour the same determination I once poured into giving Penny the fullest life into this mission. The roadmap is clear: sustained funding, coordinated research, relentless awareness, and a movement of people who believe that wings scattered from a thousand small actions can change the weather.

Charity Matters: What life lessons have you learned from this experience?

Kate Doerge: First, we always have a choice in how we play the cards we’re dealt. That wisdom from my dad has become a daily practice. Choose to move literally. Put your feet on the floor. One step. Then the next. Small, actionable steps carry you through the mud of grief.

Second, look for the signs. They’re real. Butterflies on the window in November. A radio that wasn’t on suddenly playing “Walking on Sunshine.” When you keep your eyes open, you realize our loved ones are with us differently, but powerfully.

Third, collaboration is oxygen. In research, in advocacy, in community building, the magic happens when we invite everyone to the table….scientists, students, brands, media, families. We each bring a wing to the flight.

Fourth, service multiplies. The “butterfly effect” is not just a metaphor….it’s a strategy. A student chapter post turns into a game night turns into a grant turns into a lab experiment turns into a breakthrough. Tiny flutters, big weather.

Finally, positivity is not denial; it’s discipline. Choosing beauty in imperfection and faith over fear doesn’t erase pain. It transforms it into purpose.

Charity Matters: How has this journey changed you?

Kate Doerge: Three years ago, I couldn’t have imagined this life….writing a book, speaking about reimagining grief, launching workshops to help others navigate adversity and midlife reinvention, stewarding a national movement in Penny’s name. I used to search for the “one client” that would let me move the needle; now I see that the needle is people, and the work is love organized.

I am more certain, more grounded, and oddly, more joyful. I feel accompanied by Penny, by my parents, by a community that believes in light. I’ve learned that grief and gratitude can share a sentence. I’ve learned that teenagers can be fierce world-changers. I’ve learned that when you open your doors in the hardest week of your life, you teach an entire community how to love without fear.

Most of all, I’ve learned that it’s our wingspan…how far we’re willing to reach for others…that measures a life.Penny taught me that. Now it’s my job to help the world learn it too.

CHARITY MATTERS.

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER. If you enjoyed today’s episode, please connect with us:

• www.Charity-Matters.com
• On IG @Charitymatters 
• Post a screenshot & key takeaway on your IG story and tag me @heidijohnsonoffical and @Charitymatters so we can repost you.
• Leave a positive review on Apple Podcasts
• Subscribe to new episodes each week!

Copyright © 2025 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.