VB Gives Back
to
Penny's Flight Foundation
“It’s about your wingspan, not your lifespan,” says Kate Doerge. It’s a mantra she repeats often when describing the impact her daughter Penny had on those around her during her too-short life. When Penny passed away at age 16 from neurofibromatosis (NF), the Doerge family founded Penny’s Flight
Foundation not only to find a cure for NF—though that’s the nonprofit’s focus—but to spread the joy and positivity that Penny emanated.
Here, Kate, co-founder of this quarter’s VB Gives Back partner, shares more of Penny’s moving story and how Penny’s Flight celebrates her daughter's life.
Q&A
Tell us about Penny.
She was the brightest light with the biggest heart. She led life to the fullest. She had the most contagious laugh and way of living life to the fullest every single day. From the time she was diagnosed with NF, we were focused on making sure she lived the most full, biggest life possible. She did everything. She skated and did ballet and wore wedge heels and danced. Through all the treatments of chemo and radiation and hundreds of MRIs and everything she went through, she maintained her big, beautiful smile and never once complained. She just elevated herself above what was happening.
"Penny’s Flight is about her journey through life and her continued journey."
What was Penny’s experience with NF like?
She fell off our bed when she was four months old and fractured her tibia. We raced to the hospital and were told that it was something called congenital pseudarthrosis, which one out of 300,000 kids are born with. The orthopedic surgeon told us that it probably also fell under the umbrella of NF because most kids who have congenital pseudarthrosis have NF. Penny had her first leg surgery to fuse the bone and then did genetic testing when she was a year old that confirmed she had NF. We never went down a rabbit hole of NF research. We focused on her leg and making sure Penny had a full life. Then, in the Fall of 2020, we noticed that Penny had a bit of a wandering eye. Her ophthalmologist scheduled an MRI where we discovered the first brain tumor. We had it removed right away, and it was benign at the time. But it continued to come back and turned into a glioblastoma. Altogether, she had seven leg surgeries and seven brain surgeries.
How did you and your family help foster Penny’s positivity? Or do you think it was innate in her?
I think it was a combination. I grew up with an incredibly positive mother and an incredibly strong father, so I was fortunately raised with that foundation. My father, who was my greatest role model, took Chad and me aside the night before our wedding and said, “You’ve led the most charmed, beautiful life. You have incredible friends, incredible family, but you will be challenged. It’s up to you how you play the cards you’re dealt.” From that moment on, I recognized that we all have a choice in everything we do, and I have chosen joy and positivity. So I think we instilled that in Penny, but we also followed her lead through everything. She was unstoppable.
How did you decide to start Penny’s Flight?
Something like 1,200 people came out to celebrate Penny’s life, and they wanted to donate to Hospital for Special Surgery or Memorial Sloane Kettering because those were the hospitals that had cared for her during her life. Chad and I were like—time out, we need to go to the top of the funnel and find a cure for NF. If we don’t do it, then who’s going to do it? But because we had focused just on her leg and then just on her brain tumors, we really had to educate ourselves on NF. And what was so surprising is that it’s the most common genetic condition in the US, and it’s the most underfunded because you can have a multitude of symptoms or no symptoms. The more families I talk to, no one condition is the same.
We came together as a family and with Penny’s closest friends to launch the foundation. Henry, our oldest, came up with the name. Penny’s Flight is about her journey through life and her continued journey. We came up with our brand pillars, which are so Penny, of finding beauty in imperfection, having positivity in the face of every challenge, and having faith over fear.
Why do you think this positivity movement has inspired so many people?
When we were given the news that we couldn’t go back in to take the tumor out an eighth time and it had spread, we immediately filled the
house with family and friends and light and music and loved her up. Our friends have called it a “cocoon of love.” We sent her off in the most beautiful way we could imagine. At her celebration of life, we wore color and danced and sang. And I think that’s why this movement has taken off. It was a shock for so many people to see the difference of choosing joy and positivity and celebrating someone’s life versus going so dark and so in mourning. The movement that’s been created, especially with the young people, has been because people want to spread that on. They want to spread this idea of choosing joy and how that can make a difference.
What has surprised you most about launching Penny’s Flight?
We launched with 10 pop-up events, and it snowballed from there with one-off events where kids came to us and wanted to do Pucks for Penny or Paintings for Penny or Puppy Yoga for Penny. The most incredible thing has been this younger generation. Kids who didn’t even know Penny were so impacted by her story that they have now launched chapters in high schools and college that are not only fundraisers for NF research but are also vehicles to raise awareness for how to live life with joy. That’s what has surprised me and inspired me the most. These kids recognized that they had the ability to make a difference, and they are! It's the most beautiful thing..and we've only just begun
From now to the end of June, we will donate a portion of proceeds from every single veronicabeard.com order to Penny's Flight Foundation. Keep an eye on the VB Edit to see a few of the inspiring ways people are "spreading wings" with Penny's Flight--and learn how you can get involved.
