Our friend, business leader, brand strategist, and trusted advisor Kate Doerge, faced the unimaginable, her daughter Penny passed away. Penny had been diagnosed with Neurofibromatosis when she was 4 months old -- and she lived with it, as well as irrepressible joy, for her 16 years on this Earth.
And so, rather than isolate and pull back from the world in their grief over this past year, Kate and their family have chosen to celebrate Penny's life and energy by raising awareness of Neurofibromatosis (NF for short), redefining what grief looks like and spreading Penny's legacy of love and light.
We are in awe of Kate's strength, resilience and positivity in this lifetime. We know that her journey can help all of us handle whatever life throws at us with more love, grace and fortitude.
We will all face loss in our lives, Kate will give you a completely new perspective and approach to handle what may be the most difficult time in your life. You don't want to miss this conversation.
WHAT YOU CAN DO
Visit theseekingcenter.com for more from Robyn + Karen, plus mega inspo -- and the best wellness + spiritual practitioners, products and experiences on the planet!
You can also follow Seeking Center on Instagram @theseekingcenter
Our friend, business leader, brand strategist, and trusted advisor Kate Doerge, faced the unimaginable, her daughter Penny passed away. Penny had been diagnosed with Neurofibromatosis when she was 4 months old -- and she lived with it, as well as irrepressible joy, for her 16 years on this Earth.
And so, rather than isolate and pull back from the world in their grief over this past year, Kate and their family have chosen to celebrate Penny's life and energy by raising awareness of Neurofibromatosis (NF for short), redefining what grief looks like and spreading Penny's legacy of love and light.
We are in awe of Kate's strength, resilience and positivity in this lifetime. We know that her journey can help all of us handle whatever life throws at us with more love, grace and fortitude.
We will all face loss in our lives, Kate will give you a completely new perspective and approach to handle what may be the most difficult time in your life. You don't want to miss this conversation.
WHAT YOU CAN DO
Visit theseekingcenter.com for more from Robyn + Karen, plus mega inspo -- and the best wellness + spiritual practitioners, products and experiences on the planet!
You can also follow Seeking Center on Instagram @theseekingcenter
Robyn: I'm Robyn Miller Brecker and I'm Karen Loenser. Welcome to Seeking Center, the podcast. Join us each week as we have the conversations and we, through the spiritual and holistic clutter for you, we'll boil it down to what you need to know now, we're all about total wellness, which to us needs building a healthy life.
Karen: On a physical, mental, and spiritual level, we'll talk to the trailblazers who'll introduce you to the practices, products, and experiences that may be just what you need to hear about to transform your life. If you're listening to this, it's no accident. Think of this as your seeking center and your place to seek your center.
Robyn: And for the best wellness and spiritual practitioners, experts, products, experiences, and inspo, visit theseekingcenter. com.
Our friend, business leader, brand strategist, and trusted advisor, Kate Doerge, faced the unimaginable. Her daughter, Penny, passed away. Penny had been diagnosed with neurofibromatosis when she was four [00:01:00] months old, and she lived with it as well as irrepressible joy for her 16 years on this earth.
And so rather than isolate and pull back from the world in their grief, Kate and their family have chosen to celebrate Penny's life and energy by raising awareness of neurofibromatosis, NF for short, redefining what grief looks like and spreading Penny's legacy of love and light.
We are in awe of Kate's strength, resilience, and positivity in this lifetime. We are so looking forward to this conversation because we know that her journey can help all of us handle whatever life throws at us with more love, grace, and fortitude. Hi, Kate.
Kate: what a pleasure to be here. Thank you both so much.
Karen: Oh, I feel like this is a big hug moment because we've known you for such a long time. We've known you with Penny. Yeah. And after Penny. And so this is just a really great celebration for us to be able to bring you to people who are listening and share
Kate: your story. I feel the very same way about the two of [00:02:00] you and big virtual hug to everyone out there as well.
Robyn: Let's start by talking about Remarkable Penny. and your journey with her.
Kate: Oh so much to say about the remarkable Penny. She was the brightest light with the biggest heart. And I think from the minute she, arrived in this world, she brought so much positivity and joy and, with her bouncy brown, curly hair, she just was the brightest light when she entered any room.
And Chad and I just knew from truly the earliest years that she was special. So to jump right in and tell you more about Penny and our journey when Penny was just four months old, she rolled off our bed and fractured her tibia bone.
And it was one of those moments that we have an older son, Henry, who was two years old at the time when Penny was born. And when she rolled off her bed, we had never had an injury, little bumps, scrapes here and there. But so [00:03:00] Penny didn't even cry. When she rolled off our bed, this is to go to show you how resilient this child was.
But her leg was hot and she was lifting it like a little bird. And so we raced to the pediatrician and the pediatrician said, this looks like a fracture and I want to send you right up to Hospital for special surgery, which is based in New York City. It's the number one orthopedic hospital and When we arrived we met Dr.
Roger Widman, who's the chief orthopedic surgeon, and he took one look at Penny's x ray and he said, listen, I just have to tell you, this is not only a fracture, but to me, it looks like something more rare called congenital pseudarthrosis. And he said, one out of 300. Thousand kids have this, and not only that, but I think it's under a bigger umbrella, something called neurofibromatosis.
And so Chad and I looked at each other at the time. We're like, okay, what did he just say? He's don't Google it. Let's just focus on her leg. And that's what we did for the first, really. 14 years of her life. And in [00:04:00] speaking about her fractured tibia bone Penny wore a little brace every day of her life and she bedazzled it was camouflaged and it was different colors of the rainbow.
and she had seven surgeries on her leg over the course of 14 years to fuse that bone and keep it. But to speak to her character, she was wearing this little brace every day of her life and she was doing gymnastics and she was doing ballet and she was wearing her wedge heels into her teens and the brace never defined who Penny was.
And so we just followed her lead because we wanted to make sure she led this big, beautiful life. And she was funny and and fun. And so yeah, that's just a little bit about Penny as we start to talk more about her.
Robyn: And can you tell us what NF is and what you came to know.
Kate: Yeah, certainly. And so I guess going back to that first [00:05:00] diagnosis from her orthopedic surgeon, he threw it out there to say, and I think her tibia bone is a result of something called neurofibromatosis. And he said, but don't. Even Google it, don't go there because it's a scary place to go if you go down a rabbit hole.
And I think at that point we were just so focused on her leg that we didn't focus on NF. But when Penny turned two years old and she had her first surgery on her tibia bone, I mentioned she had seven surgeries. First of her seven, when she was just 18 months old and she was in a body cast for four months, commando crawling across the room.
I know. No, it was, people ask me, they're like, how did you do it? I'm like, we just did it. Like we just were so focused on making sure her body cast was bedazzled and beautiful. And she had beautiful bows in her hair and that she. Could and would do anything with our family and our friends and be a part of it never felt like she was different.
[00:06:00] So we were so focused on that time on her leg that it wasn't until she was two years old that we did have this genetic testing, and Penny tested positive for NF and neurofibromatosis . is the most common genetic condition in the United States. And as crazy as that sounds, because majority of people can't even pronounce neurofibromatosis or know what it is.
It is because of the fact that you can have a multitude of conditions under this umbrella of NF that it makes it very complicated. To focus on what it is. So for instance, like breast cancer, we know what breast cancer looks like. It's very easy to diagnose. NF you can have on the spectrum of conditions, anything from cafe au lait spots that are showing up externally on your skin.
You can have tumors that are growing all over your body. You can have this bowed tibia bone, which is what Penny had, congenital issues. So it's a very complex condition because [00:07:00] NF is the growth of tumors anywhere along the nerve pathways in your body. So for Penny, she was fortunate, and I say that in quotations, she was fortunate in that she, really only had this bowed tibia bone and the congenital pseudoarthrosis.
She did have some cafe au lait spots, which , she called her beauty marks. And that was really it. So we would have annual appointments to make sure we were checking, her optic nerves, she would have MRI, she would have scans just to make sure tumors weren't growing. anywhere else in her body.
And they didn't until they did in 2020, which is when we first saw the first of her brain tumors.
Karen: so much of what you're saying reminds me of when my son was diagnosed as a baby and going through It's trauma as a parent. It's trauma for them. Can you talk about how you balanced that on the day to day you and your husband, you and the family?
Obviously, Penny clearly was this determined. Child from the very beginning, who almost, [00:08:00] it seems like, refused to live her diagnosis even though it was part of her day to day. Can you just talk about how you, as a family, dealt with all of that on a day to day basis, and how you kept that positivity with Penny along the way?
Kate: I think you're right, Karen, I talked to so many families who, that feeling of when that diagnosis comes down, that weight that comes over you, And my belief is we all have a choice and this goes back to, and I tell the story often about when my husband Chad and I, we had dated for six years and the night before we got married, my father, who truly was like the greatest role model in my life, along with my mother, very spiritual and he took us aside and he said, listen, the two of you have led the most beautiful life.
You have wonderful families. You have wonderful friends. But you will be challenged and it is up to you how you decide to play the cards you're dealt. And Chad and I looked at each other and looked at him and we're like, you're like killing our vibe here. We're about to go into this like amazing [00:09:00] long wedding weekend.
And what is he even talking about? And it didn't sink in at that moment, but it really was the moment that Penny rolled off our bed that first time, and the moment that Dr. Widman said to us, this is the diagnosis. that something internally came over me where I thought back and Chad was with me on this journey about my dad had said it's up to us how we decide to play those cards were dealt.
And it's not easy, to choose joy but really it's about how do you hold joy. And we've talked about this before is when you hold joy. Your life changes forever and anything that happens to you, that result is a result of you holding joy because then you vibrate that energy out to others.
So I think when anything came up, those instances of the diagnosis, the, okay, we've got to go in for surgery. Okay. She's going to wear, a [00:10:00] cast for another three months and then another brace. it just was like, okay. What's the alternative to choosing joy? It's so dark and bleak, but if we choose joy and make the best out of this scenario, how much better are we going to be in the end?
So that it definitely took some digging deep through everything we went through. But actually, Karen, this is what pulled us through. Our entire journey. I talk about Penny wearing a brace for the first, 14 years of her life, but it really was at age 14 in the fall of 2020 when Penny, it's funny because it was during COVID and kids were online and so much screen time, right?
Because they were virtual for school. That Penny had a little bit of a wandering eye, and we hadn't seen it before we took her to her eye doctor, and the ophthalmologist said, I've been seeing this with kids because their nerves are just so intent on the screen that this is somewhat common.
He said, but. I want to send you [00:11:00] in for an MRI and we look back on that he's a specialist for NF patients. And we truly believe he probably knew something was awry, but didn't want to didn't want to upset us off, put us. So he was like, I'm going to set you up for an MRI. You're going in tomorrow.
And so we went in and it was that MRI that showed the first brain tumor and it was so immediate that, and it was so large, the tumor that they couldn't believe Penny wasn't suffering in other ways, her mobility or getting sick. And so I'll never forget it. It was October of 2020 And I had come home from the MRI, got the call, we drove out of New York City back to Long Island, where we live.
And they said, you got to turn around and you got to come into the emergency room. And we got to get this out immediately. And so at that point, my husband, Chad, drove Penny into the city. I took care of our other son who was home. Our other one was away at school. And I said to Chad, okay, I'm going to get them off to school in the morning and I'll come in and meet you right [00:12:00] as Penny's going into surgery.
By the time I got into the city, I looked at Chad and he said, she's gone in. She's good. She's ready for this. And I said what did the surgeon say? He's he's amazing. I was like what's his name? Chad's I don't remember, but he's amazing. Remember the surgeon's name. But I think this goes to the point that we have so much faith and Karen, when you ask what pulls you through and, Robyn, Karen, we've talked about this, but it is this holding joy and having faith in knowing that you're in the best hands and that.
things are happening for a purpose and a reason. and listen, I'm not saying we're naive and we're just, we're putting our hands into any surgeon out there, but we do laugh with Dr. David Harter, who was Penny's surgeon and was her surgeon for the next six brain surgeries that she had after the.
first one she had. And he laughs because he's you didn't know my name. And we're like, we trusted you so wholeheartedly. And we knew you were a rock star. So I think [00:13:00] yes, to answer your question, that's a long answer. But it is holding joy and choosing joy and having faith.
Robyn: would also say, knowing you and actually having met you around that time, Karen and I had no idea what was going on behind the scenes.
And I don't think most people in your life knew what was going on. And that again is a testament to you staying present. So I think for you, it's choosing joy, making that choice. And it's also you staying in the present moment, no matter what you're doing. So when you were with us, which was very often on zoom, you were so present and so there, You'd be like, I have to go to the city , for this thing. And at some point during , one of the surgeries we you did tell us she's going to surgery. We still didn't even know the extent of things.
Kate: And I think that's penny, right? I think that, yes that's, I certainly live my life that way.
And it's not about compartmentalizing, [00:14:00] but it is more of, yes, I want to be engaged. I want to be present and it's not, I'm forgetting what else is going on, but . I am choosing joy. And Penny chose joy. Examples of that was that she never let the brace on her leg or the radiation treatment she would have, or the surgery she would have impact her life in any way.
And I think that started from when she was a little girl and we were like, okay, she has to have surgery, but guess what? We're going to Florida, the day she gets out of the hospital and she's got a body cast, but we're going to. dress it up and put a bag in take her to the beach or, whatever it was, nothing stopped us from living a very normal life.
and I think that goes back to don't want a diagnosis or any situation to not only your child or you, but your whole family. Cause what does that do for the siblings? And that was very much Penny. Like she would purposely when she was diagnosed with this brain tumor. After [00:15:00] her first surgery in the fall, she had a second surgery in the spring, and that's when we determined she had to do this proton radiation treatment.
And that was every day, five days a week for six weeks. And we had to drive into New York City, which is 45 minutes away. She had a 20 minute blast of radiation, and then we would drive home. And this was during the summer, right? So it was June, July. And Penny was a counselor for her glam camp with two of her best friends and she had all these little five to nine year olds who were depending on her because she hosted this camp and they had theme days and it was dressed up as your favorite Barbie And she said, she was like, nothing is going to change that I am doing that this summer.
And I was like, okay, so we will schedule your radiation. So it's eight o'clock in the morning and we'll get up, we'll drive in, we'll go have the blast and we'll get out and camp will start at 10. And that's what we did. And her friends didn't even know she was doing it. They eventually, they ended [00:16:00] up coming to a couple of treatments with her.
One of them landed on her birthday and so she brought all of her friends to her radiation treatment and then we brought everyone to Asbury Park for a sleepover and, a big night out and then she had to come back and do radiation the next morning on the way home and she just did it , but it is that choice of we compartmentalized it in the way that, What is the point almost of talking about it for, I don't know, it didn't feel like it was going to help anyone.
So it helped us just to kind of motor through focus on that, and then focus on a really happy big beautiful life for her.
Karen: It says so much about how you guys made the choice of it not becoming your life, right? I think that is such a huge difference because I know even in the cancer world, I think once you have that diagnosis, it's easy to wear that like a robe every day.
Like it's always looming and it's always a possibility to come back or it has [00:17:00] become my day to day. And I think you guys did such a great job, probably led by Penny, but also because it was part of who you were as well of not allowing that to be like, I always love to say the diagnosis is not the prognosis, you can have doctors tell you something, but it's really up to you how you live with that.
Kate: And I think you completely. And it actually, it's so funny, Karen, you say that because, this surgeon, Dr. Harder again, when. We would have these MRIs and listen, we all recognize, especially when you're going through, whether it's cancer or one of these other conditions that you're always waiting, So you've got the MRIs, you've got these tests and you've got the span of a three to six month and you're living your best life until you're that next test is coming up. But I don't know, we were able to. Put it aside and truly focus on those good moments and then when we did have the test and something would come up, it was like, all right this is what we're gonna do.
I think again, we had faith and we had an incredible team. [00:18:00] So Dr. Harder, brain surgeon would say, all right the tumor's back. And he would consult with Memorial Center Kettering, who was our treatment on the cancer side of things for the glioblastoma. And they would say, all right If he feels confident that he can get in and he can get it out, then let's do it.
And we'd be like, great. And he'd say, all right what do you have coming up? And we'd be like we have a river rafting trip in two weeks. He'd be like, of course you do. Okay, let's go. and we would do it, we would go in. And we would say that to Penny. We'd be like, all right, Penn, this is what we got to do.
The tumor's back but Dr. Harder feels confident. We're going to get in there. We're going to get it out. And then we're going to go down the Salmon River. Nothing's going to change that. And we did.
Robyn: I just. think that for those listening right now, who are going through a hard time, no matter what it is.
Yeah. To hear your story, and Penny, and the way your family carried on, is such an inspiration. It's an inspiration to me, I can tell you right now. Thank you. Because I do think [00:19:00] having that attitude changes everything. I think for a lot of people, it feels easier to give in to the fear.
Yeah. And I think in your case, It doesn't mean that you never had moments of fear, but you didn't give
Kate: into it. Did not. No. And I, and that's a really good point because I'm not saying that it's easy. This is not easy. This choice of choosing joy and having faith and positivity. But I just recognize that.
If you are able to pull yourself up and put your two feet on the ground every morning and get going, that the difference that it makes versus pulling your, the covers over your head and be like, I can't do this. Everyone can do it. You can do it. It's just, you've got to put that extra energy in and what you get.
Work is so incredible and we saw this right through Penny's whole life because once we led the way to be like, Oh, she wears a brace every day. Yeah. And didn't stop to say, Oh, but she [00:20:00] can't climb the tree or she can't do this or be careful of her. She was never treated like a porcelain glass on the shelf.
And even with her brothers, they would wrestle with her and she was funny with them because I think she felt that confidence like she wasn't quote unquote different she was just penny and that's how everyone knew her was the spunky resilient very bright positive happy kid. And so that's how she led her life.
And, the beauty of all of this is the legacy that she leaves behind. And I think, as we progress through her brain surgeries and going on these river rafting trips and, traveling to Florida and doing glam camp and her paintings and everything she did to bring so much joy to her own life and to her friends lives. In the fall of 23, when we recognized after her seventh brain surgery, that the tumor had progressed. And unfortunately with glioblastomas in NF [00:21:00] patients, which by the way, are very rare there's a sheath or a barrier that holds the glioblastoma. And then once that goes, obviously that goes.
And so with Penny's case, it was literally within a week that she passed. So it was so quick, but the incredible thing about that, the beauty of that was that she did not suffer. And the beauty of that was that we had this Beautiful week where we chose joy and you all know this story because you lived it with me, but it was So quick that so many of our friends who didn't know the extent of what Penny had gone through, we had to tell people and with that, we were like, come on, we're opening our doors.
We're opening our house. We want all of our friends. We want all of Penny's. Family and friends to be here and we laugh because Chad and I still look back on that week where Music was playing. We had so much [00:22:00] food and drinks and it was a beautiful week here in Long Island Weather wise and so the doors were open We would have anywhere from 50 to 60 people at any one time in our house and we laughed because the radio station, I of course love like 70s on 7 and Chad likes Phish or Trey Band or whatever he likes.
So we were, that would be our biggest battle is what radio station we were playing. But people couldn't believe how we were choosing to Celebrate Penny during this week of her passing, and we never referred to it as her week of passing, but it was a time for people to come in and love her up and be together.
And a friend of ours had referred to it as a cocoon of love, our house, because you entered and it was so bright and it was so beautiful that you couldn't help but feeling this just energy of love. and another friend referred to it as we're sending her on a rocket ship of love, which is, [00:23:00] incredible.
Cause it's you can't ask for anything greater than that. And so not to make everyone cry, but it is no, but it's, but my point of telling that is that because this was so beautiful And because penny lived this incredible, beautiful life that the celebration of her life, we chose joy right during that week.
And then when we were planning the celebration of her life, we're like, all right, we got to do this. We have to make sure. It's colorful and it's light and it's a celebration, right? It's not a funeral. And so no one wore black. Everyone wore color. Girls did TikTok dances, performances. We had people saying we had butterflies.
everywhere. And 1200 people turned up to celebrate Penny. And it was so overwhelming because I think we didn't even recognize the impact she had on not only her friends, but just even [00:24:00] like Close connections or people who she had passed by or people she had gone to camp with that she never talked to us about, but she had left this impact on them that they wanted to be there for her and they continue to be there for her now after the celebration of her life and after everything we've done with the foundation.
Robyn: let's talk about the significance of the butterfly because you mentioned butterflies everywhere. And why?
Kate: Everywhere. It's incredible, right? So for Penny's 16th birthday, she's always loved butterflies, but I gave her, a friend of mine, Jennifer Creel is a jewelry designer, and I gave this butterfly, which I wear now that says Penny to Penny for her 16th birthday.
And all of a sudden, at Penny's passing, there was butterflies everywhere. There was not only butterflies, but I will step back because I've told you all this story that we had all these people in our home and two of our best friends were outside of the house. Walt, Chad and I and the boys were with Penny in the room at the actual moment she was [00:25:00] passing and these friends of ours looked up to the window of where Penny's room was and there was this incredible bright light.
Shining into the room and they took a picture of the window at the time. They didn't know what was going on, but they just thought, God, this light is so bright and so beautiful. And they showed us the picture afterwards. And I looked at the timestamp and I said, Oh my gosh, that is. That's 215.
That's the exact moment. And Karen, you'll appreciate this because 215 we know is eight, the number eight, which is our lucky number and the sign of infinity and internal love and all that. But the most incredible thing about that moment in that picture, was when you look at that picture, You say our driveway and there's all these cars in the driveway, but there's also the shape of a cross or an angel from the sunlight hitting at this exact moment.
We were seeing the signs so early on and we were seeing, the angel in the sunlight in the shape of an angel. [00:26:00] We got into the car to take the dogs for a walk right after Penny passed and one of her favorite songs was Walking on Sunshine And she sang it and there's a great video of her that we actually have on our website of her singing it, but walk the dogs, gotten the car.
And what song is blaring on the radio is walking on sunshine. So there was all of these things that just were coming up, but the butterfly is an incredible one because one of Penny's best friends told me, she said, the butterfly represents an inextinguishable soul, always drawn to the light.
And I thought, God, that. It's perfect, because that's Penny. And it is the perfect representation of, the smallest act like the flap of a butterfly's wings can cause a phenomenon. And this is what we are doing. We are causing this revolution of spreading wings and shining a light in Penny's name to find a cure for NF.
And so that begins Penny's Flight Foundation,
Robyn: [00:27:00] what everyone should also know is that Kate and your family started this literally within a month of Penny's passing, which we know is also because Penny is behind it as well with her energy. Yeah.
Karen: Before you start that too, I just have to say as you're telling the story, what I'm visualizing as you're describing her passing is the flight, It's that you were there to help her literally take flight. And those butterflies were just the symbol of her doing that. So I just love this transition and this connection to the name of her foundation as well. So sorry to interrupt, but I just had to say that
Kate: that's so much part of actually the process of.
What gets us to the foundation and the naming of the foundation and Penny's life being her flight and the continuation of this beautiful flight. You're right through the process her entire life and through to the afterlife and and yeah. So Robyn, it was amazing [00:28:00] because. We were so overwhelmed and overcome by the outpouring of love and support and attendance at Penny Celebration.
That was on a Friday that Monday Chad and I woke up and we looked at each other and we're like, we got to do this. Like we need To do something here because Penny's made such an impact on so many people and helped so many people already. We need to continue this on. And certainly I felt like I knew this was my life's purpose.
Penny lived her life's purpose with the most beautiful big life. And there's no coincidence. I've been in marketing and PR and fundraising and All of that, that I've always wanted to make an impact and help others through everything I've done. So this is the biggest way to do that. And so we woke up on that Monday and we looked at each other and an obvious thing would have been to continue to fundraise for hospital for special surgery, HSS.
I'm a board member. I run the annual fundraiser because of Penny and. the reason she brought us there. And [00:29:00] then we thought no, she had a glioblastoma. She passed because of that. We should support, cancer research and brain tumor. And we were like, wait a second. This is all under the umbrella of NF, which by the way, we had never focused on.
So majority of our friends, majority of her friends, our family certainly NF. So that's an important point. We go back to, she was never diagnosed or she was never defined by this diagnosis. NF was never in our vocabulary. So it took us a moment to recognize that all of this happened because of this umbrella of neurofibromatosis.
On that Monday, we woke up and we said, not only do we need to continue to spread Penny's positivity and her beautiful story to help others find joy and positivity, but we need to find a cure for because no other family should go through this and so we decided we were going to launch this and to your point, Karen, and talking about the name, was it Penny's Purpose?
Was it Penny's Power? What [00:30:00] was Penny's? And it was Henry, our oldest, who said it's Penny's Flight. And so from there, And it just came out of all of us. It was literally the most cathartic, organic, real process where we sat down as a family and brought our closest friends in and all of a sudden, one of our best friends a godparent to Henry.
I sat down and he sketched, he's not even an illustrator, he sketched the logo, just came out of him. And then it just came together so within three weeks time, we got our temporary 501 C3 and penny passed on November 10th. December 9th, we launched Penny's Flight Foundation. The day after we launched, we had Eli Manning and we had Jimmy Fallon doing the butterfly hands.
We had 15 Penny's pop ups across the country that we had planned. So there was so much awareness right out of the gate. Two weeks later, Chad and I, we have our good friend Nora O'Donnell and she brought us [00:31:00] Onto CBS news. And so we did a segment with Nora and it just continued to snowball and it just has grown and grown.
And to date, here we are at 13 months, since launch. And we've raised over $3 million and we're funding scientific research. So it's just, it's all penny. we're the vehicle.
She is really directing us and leading us to do this. And that's where, and I go back to say, I'm living my life's purpose, but I'm doing this to help her.
Cause she lived her life's purpose and to help so many others. So it's been an incredible very busy year and we've only just begun. I love
Karen: it. I can feel her energy literally in you
Kate: right now as you're
Karen: talking. I can feel this, like she's getting so much out of you explaining this to all of our listeners, but also just this ability to maintain this close connection with
Kate: you.
That's, what's amazing. And I think back to, listen we choose joy through her life, but how do you [00:32:00] choose joy at loss? And that's a, a big topic. And we go back to, that ability to gather that strength and celebrate someone after you've lost them, especially a child.
Cause that's the hardest thing ever. But I think that choice that we made to celebrate. Her through that last week and then waking up and saying we will not mourn. We are going to celebrate and we are going to help continue to spread her wings and her legacy so she will never. Be in a dark place.
She will always be fine. And I recognize that choice that we made has impacted all of our friends, all of our family, our community. a normal path to take. And I also recognize that. And I guess my hope is that we can change that as well. mindset and that hopefully we can be a role model to others [00:33:00] that you can choose joy and there's a really beautiful positive thing that comes out of celebrating someone versus mourning them.
Robyn: And I think we've talked about this before and actually we have had a conversation with someone else who also had a really Deep, tragic loss, and similarly chose joy and to celebrate that person's life. And to your point, it isn't the norm. And so when we talk about grief, and I love what you just said about celebrating rather than mourning.
Because all of us, everybody listening, will experience loss in their life. in addition to just choosing joy, what would you say to somebody who has just lost somebody? And they actually are having a really hard time getting up and looking at anything with positivity. I know personally I just went through a really hard time and have been in my own life With an ailing parent and there were days that have been [00:34:00] really hard and I am one of the most positive people that I know.
Yeah. Even in those moments, I can feel that there's like darkness. And how do you fight that? Because that's, I'm even asking selfishly for me, and we've had these conversations and your light is so bright. And by the way, to Karen's point about seeing Penny, I actually see wings coming out of you.
And I see things. So I, that's what I see. I see the wings. So I just had to say that. I love that.
Kate: Yeah, listen for your listeners. Also, Penny was not the only loss that I've had. I, had tragic losses. My father had passed away and my mother died in a car crash six days before Christmas.
And that moment also was a moment. That was so shocking because of the fact she had lived the most beautiful bright life just like Penny and I got that phone call and I'll never forget that moment and it was a moment of Okay, it's six days before Christmas. I've got three children and two brothers and a family [00:35:00] and it's Christmas and this is the season of joy And what am I going to do?
we got to choose joy. And my mother lived her life in joy. And that's what we got to do. And we did that for my mother. And we celebrated her life. And she passed two years before Penny did. And it was almost like a dress rehearsal for Penny, but it happened for a reason. She lived her life's purpose to show me how to choose joy and to live life to the fullest and in a bright way.
And so I think I took my mother's light from her and was able to project it to Penny and the way Penny passed. But there were certainly moments after all the celebrations of my mother's life and after choosing joy and staying so present with. My family during the holidays that year and my friends and celebrating my mom, certainly I'd be driving in the car and I'd be like, wait, I just lost my mother who I talked to in the morning, but she, got into a car crash in the afternoon and she's not here.
And I think what has Brought me through. And the same thing with Penny is to know, to [00:36:00] have this faith, to look for the signs, to feel that connection. And I think staying connected when you're here present, and then when those that you've lost have left. You still have that connection and people have said, that veil is very thin and we know that and with those signs that you look for.
I continue to tell Penny's friends who, there's no playbook for losing your best friend at age 16. they barely lost their grandparents. So to lose their very, very best friend, there's no way to tell them how you get through this. But one thing I have said to them is she's right here, look for those signs, feel her.
The more you open yourself up. And the more you put your two feet on the ground and get out of the house and put your face into the sunshine, the more you'll feel her. And you'll open yourself. Up to her and you're just going to be filled with that warmth and joy. And I guess that's the only advice I can give, which is [00:37:00] you just need to put one foot in front of the other and just keep going and know that yes, there are going to be really tough days, but if you can just open yourself up and to see the signs, to feel the warmth.
The sunshine and just keep moving forward, you're going to get through that rut.
Karen: One of the things that you're saying now that is an aha for me is similarly like in my family, my mom lost her mother two years before my sister passed and it became her purpose as well to be able to write a book about grief and talk through that grief journey and try to help other people.
And I feel like so many of these. Traumatic situations are inviting us to look for what is it in my soul's journey that I'm supposed to learn here. What am I supposed to do with this experience that can action positivity and shift it for something to be able to share with other people who are going through similar [00:38:00] things.
And I just wonder, Kate, do you have a belief that your mom. And Penny and you had this soul contract. Do you go there in your mind and feel like, Oh that's why this has been our journey is because we were meant to do this to help others in
Kate: our life. Listen, it's thanks to you all, because, Robyn as you were saying, I think there is a reason why we were first connected in the fall, whatever that was. It was right before Penny's first diagnosis. And you had introduced me to Lisa Nitzkin, who was the medium. And it was the, I was not even a believer and I am now a converted. and it was the greatest gift that you could have given me because my mother had passed away and.
I hadn't had that moment. I chose joy on my own. And I think that is my own frequency, my own energy. And I certainly got that from my parents growing up. But had I [00:39:00] not had that session with Lisa, who really, truly inspired Validated all the feelings I had. she was like, Listen, you are intuitive.
You know that Penny's living her life's purpose. And no matter what happens, it's going to be okay. And there is a connection between your grandmother, your mother, Penny and you. And I said to her, because I've gone back and watched the video multiple times. I said, I know I know this and I know she was like, you're going to make a big impact.
You're going to be talking to a big audience. You're going to be helping others because of Penny. And I said, I know. And so I think that I certainly recognize my mother had to pass when she did, right? There's no coincidence that she got into a very random car accident. She hit a parked car.
FedEx truck at the end of her driveway. And it was six days before Christmas. There was no coincidence that she was the most [00:40:00] joyful person I knew who passed during the season of joy. And there was only one way we could celebrate her, which is in a joyful way. And same thing with Penny, it just, it all happened for a reason.
So you're right, Karen, to recognize that. That's the faith, right? That is the faith that I have that I know that this path is the path we're meant to be on. And so it feels really good. And it's fulfilling that we're able to not only help others, But truly continue to keep Penny's legacy alive.
And that's really cathartic for everyone. Not just myself. I'm living my life's purpose, but for my boys, for my husband, it has been, I think, a transformative year for all of us. So yeah, I can't ask for anything more. I'm filled with gratitude and love and just recognition that this is all happening for a reason.
Robyn: And from what you just said and putting the threads [00:41:00] together, about when Penny had to have her first brain surgery and you didn't know the surgeon's name. You had the faith, right? And you knew you'd been led in that right direction.
You had been doing all the in quote, right thing. So you knew, and I feel that's how we were connected. We were connected at a time. Where this was like before everything really changed and really transformed in that way. And so we were able to be a connector and helping you prepare and receive the validation that there is something beyond this human body.
And you may have known that in other ways because of your faith. However, getting a more a way, tangible
Kate: validation, for belief,
Robyn: because to me, belief is also that other part of thing.
Kate: Yeah, it is. And the belief be able to see the signs to know that this is happening for a reason and going back to that friends of ours to see the angel in the driveway to see the [00:42:00] bright light and to make those connections and understand this is all happening for a reason and that there is the faith and there is this connectivity still with her and I think about that as I said, like sitting in the car and turn on the radio and there's, walking on sunshine.
It's just, I think the more we all open ourselves up to see those signs, having that faith the more connected we're going to feel and the better we're going to feel. But you are absolutely right. It all happened for a reason. And I'm just so grateful to the two of you. It brings it full circle.
Robyn: And I want to point out one more sign that I want to just share that happened after Penny passed is I was relaying what happened to Lisa, who had given you that reading. And at that time, it was a year prior, at least. And I was telling her what happened. And out of nowhere, we were at her house.
And she said, hold on a second. And she ran into her bedroom and she came out. And in this [00:43:00] plastic case, she had this huge plastic. Penny, literal penny, and I was sharing this with her at the end of November and she said over the summer she had been somewhere, random, and she saw this penny and she didn't know why she bought it, she didn't, she's I didn't know why, and I left it in my nightstand, and as soon as I told her what happened, she said, hold, she really ran over to, you need to send this to Kate,
Kate: This was I know this is now I have
Robyn: yeah right and now you have so it's all of the connective tissue and the signs and the messages that you receive from penny and your mother in the most random of places at the most random of times is what helps with the faith and the belief and that fortitude to keep
Kate: going.
It really is. And I think also the lessons to teach, as I said, Penny's friends, my family, my boys, like it's just, you can't imagine the amount of DMS I get on a daily basis or texts or, emails from people who send me butterflies, they see butterflies everywhere. It's like [00:44:00] butterflies.
honestly, you can't make it up. Every fashion designer has butterflies in their collection. There's. Butterflies everywhere. And and so I think that is also the beauty of it is that once you can pass that on to others and they see it, that's the wings that are spreading. And that is what we are so grateful for.
Cause when we talk about, Penny's life lessons, that we're trying to teach is finding beauty and imperfection, positivity in the face of challenge and having faith over fear are our three pillars, but To spread your wings and shine your light there's nothing more beautiful than that.
And that's what Penny
Karen: did. And I think as people are listening to, again, maybe going through something tragic in their own lives and looking for the light anywhere that they can find it, the best place to look is within yourself. What, why did this happen? Is there an opportunity for you to take this experience?
Awful as it may have been, and transform it into something that even could help one other person. It doesn't [00:45:00] have to be a huge foundation. It could be just one person. And I even know from our experience, just going back to the hospital at Christmas time and building, Christmas ornaments with the kids in the cancer ward, just doing one thing.
Yes. You don't know the impact and the amplification that can result out of that. And that's where you can be empowered to not only through the grief, but also amplify the memory of that person that you've
Kate: lost. And that's the smallest act, like the flap of a butterfly's wing can cause this phenomenon, cause a revolution.
And that's exactly the smallest act. Sending a card to someone, reaching out, whatever it is, it all makes a difference.
Karen: It really does. Can I ask about her name? When you named her what was it about Penny? That
Kate: drew you well, one of my most favorite aunts was named Penny so my mother's sister her older sister was Penny and Chad has an aunt as well named Penny and It was funny because my mother we you know, two [00:46:00] boys my oldest son Penny and then a younger and my mom always wanted us to name our daughter Cassie after her.
And my husband was like, ah, there's only one Cassie. And she was Catherine to Cassie. I'm Catherine to Kate. And she was like, I just think it would be so great to have your daughter named Cassie. And Chad was like, so Penny. just felt right. And I think that not only because my love of my aunt, but there was this feeling of just luck and joy and, pretty penny, special penny, lucky penny.
It was all just about penny. So it was just natural. It's so funny because I think, a
Karen: penny for your thoughts. I know every time I see a penny now, I think, oh, yeah,
Kate: yeah, just pennies from heaven. and all of that makes so much sense. Now, obviously, of course, her name was penny.
. And thank
Robyn: you for being you. And thank you for living your life and [00:47:00] choosing joy. And you, Penny, for being this remarkable soul that we can all feel and that is truly lighting the way for so much, including a cure for NF. And also for being an inspiration to all of us, no matter what your age is.
And for, especially I'm thinking about my own daughter who follows Penny . Flight Yeah. And is so inspired by her resilience and her strength. And so she knows that in her moments, and you should know this Kate, when she is feeling not as strong as she knows she can be, she thinks about Penny now and she didn't even know
Karen: Penny
Kate: in this life.
It's amazing. And I've heard this from other families and friends of mine and friends of friends who didn't know Penny but that's the resounding sort of comment is, I woke up this morning and I felt like crap and I didn't want to get up. I did not want to put my two feet on the ground.
And I thought, what would [00:48:00] Penny Doerge do? She would get up, she would go and she would live life to the fullest, regardless of what was going on. And I think that is, back to your point of when you're going through this to recognize here's this young girl who never once did she complain. She just wanted to live life to the fullest and with so much joy.
So I think that again, goes back to just the choice. We have a choice and this is what we should choose.
Karen: I just love starting the new year out with this thought in mind. It's actually been my mantra for the year is find the joy in everything, even the things you may not want to do. Yeah. You feel like you have to do in the course of your day.
It's like you've been saying all along, Kate, it's all a choice. And think about how we feel when we make the choice with joy rather than, with fear or sadness, it just feels so empowering. We appreciate you and we appreciate
Robyn: you. We so
Kate: appreciate, I'm so appreciative of you all.
As I said, bringing it full circle, the introduction that you made, to [00:49:00] Lisa to be connected to you all truly prepared me for this journey the last few years of this journey, and I am just so grateful to you both. I'm so
Robyn: grateful to be on the journey with you as we go forward because there's so much we can do.
And thank you for sharing all of this today. And to those that are listening, please support neurofibromatosis and finding a cure and spread Penny's wings by visiting pennysflight. org. And please follow Penny's Flight on Instagram, and we'll have these links in our show notes as well. Thank you so much, Kate.
Thank
Kate: you both so much. Big, huge virtual hug. Huge. Huge. I love you guys.