“My core message: that it is not your lifespan, but your wingspan that matters most.”
It’s Not Your Lifespan—It’s Your Wingspan
Turning Grief Into Purpose and Helping Others Heal
By Kate Doerge
“What are you going to do with your one wild and precious life?”
—MARY OLIVER
No one wants the catalyst for change to be loss or illness or tragedy. But the reality is that those things do make you re-evaluate. They make you think about how you want to show up in the world, about who and what deserves your energy. For us, our daughter Penny’s diagnosis with neurofibromatosis — the genetic condition that ultimately took her life at sixteen — started us on that path.
My father’s advice, that it isn’t the cards you are dealt in life but how you play them, made us focus on what we could control. We couldn’t cure Penny of NF, but we could make sure she lived the best life possible. We couldn’t heal her, but we could try to champion and raise money for the doctors and researchers who were devoting their lives to helping NF patients around the world.
Most of us go about our lives without truly understanding the challenges others are dealing with. Once you experience some of those challenges for yourself, it is impossible not to want to help in some way. Having someone you love be diagnosed with an incurable disease can make you feel helpless. I didn’t just want to volunteer my time; I wanted to feel like I was doing something.
I reached out to the board of the Hospital for Special Surgery, and I told them I wanted to help. I knew my experience in public relations, events, and fund raising for brands, plus my insight as an NF mom, would allow me to contribute in important ways. I eventually became the co-chair of the board of advisors for the Hospital for Special Surgery, and I joined the board as well as the hospital’s pediatric council. I spent 20 years as the co-chair of a fundraiser for the Hospital for Special Surgery’s Lerner Children’s Pavilion.
The problem was, I was trying to do all those things in addition to my full-time career in PR and brand strategy. I kept moving up in my career and at one point was a partner at a major real estate investment trust firm. I had a corner office, a great salary, and well-known brand clients. I loved my work and my clients and colleagues, but I was always most excited about doing the projects that were about helping others in some way. That was what lit me up.
Eventually I decided to launch my own firm to be able to control my time and be closer to the kids and minimize the commute, but the work that meant the most to me was still the fundraising and charity work I did on the side.
It was the pain of Penny leaving us that made everything so clear. I had to make an even bigger, more direct impact on NF. I didn’t even feel like it was a choice not to. So, we launched Penny’s Flight, which was originally about trying to raise money for a cure for NF, and through the process of telling her story, that’s when we started to realize, Okay, there’s a much bigger purpose here.
People were connecting with the idea of positivity in the face of challenge and turning pain into purpose. I was invited to speak at schools, which led to teaching workshops, plus speaking at corporations and colleges about navigating grief and how to build resilience, launching a foundation, and my core message: that it is not your lifespan, but your wingspan that matters most.
The more time I spent helping others, the more I wanted to keep doing it. It became my fuel. People began connecting me with other NF families and parents who had lost a child, and I offered whatever support or insight I could around handling illness and loss.
Everything has snowballed, and at the beginning of 2025, I made a choice to step into my mission of helping people full-time. Today, I’m doing things I never planned on—but now, I can’t imagine not doing them. I’ve lobbied Congress for increased NF research funding. We organized a global summit bringing together the top 30 NF researchers in the world. And after countless people urged me to write a book to offer another way through grief, I’m doing just that.
Everything I do is guided by one clear mission: How can I help? How can I help the NF community? How can I help other families who’ve lost a child? How can I help grievers feel less alone? How can I help others think about how they can make a difference in their own communities?
Would I have taken this path if Penny hadn’t gotten NF? If we hadn’t lost Penny? I don’t know. I would like to think I would have done it with Penny by my side. But the truth is, I still feel her by my side. She is my partner. I believe she is with me every day as we move this mission forward. This work, this question I keep trying to answer: How can I help?It’s the legacy I want to leave behind.
Anyone at any age can make an impact and be a positive force for their family, community, and friends. It isn’t about time, or money, or age, or power. Whether you are aware of it, your energy, words, and positive actions can ignite a spark of change.
Here’s what I know now that I didn’t know when I first faced loss: Grief will always be hard, but you get to choose how you move through it. You can take actions that will help your heart heal. The people you loved and continue to love even after they are gone will always be alongside you in some way, and that is beautiful and difficult at the same time. Yet you must continue—to live, to love, to shine your light— in honor of their life and in honor of your own. You are alive, you have a lot of living to do.
Let’s go.
Excerpted from Reimagining Grief (Hay House, June 16, 2026) by Kate Doerge with Sara Bliss. Copyright © 2026 by Kate Doerge. Reprinted with permission from Hay House, LLC.
