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- [00:05]
Leslie
Today, I'm honored to be speaking with Kate Durge. Kate's daughter Penny passed away in November 2022 from neurofibromatosis, or NF, the most common genetic disorder in children, yet one of which there is still no cure. Penny bravely battled NF her whole life, yet no one would have known. Penny never let her condition inhibit her in any way. She was always positive, always happy, always kind, and always optimistic. Penny lived every day of her 16 years to their fullest and in the way that life should be lived, full of love and laughter. In the wake of Penny's passing, Kate, her husband Chad, their family, and all their friends and Penny's friends started the Penny's Flight Foundation. The work and mission of this foundation has turned into a national movement to find a cure for nf. All who were touched by Penny, and even those who've never had the privilege of knowing her, have approached their cause and mission with the same boundless positivity that defined Penny's life. In today's episode, Kate and I talk about Penny's life and legacy, what she and the foundation and communities across the country are doing to raise awareness and funds to find a cure for nf, and most importantly, how she and her extraordinary family, friends and community are approaching their mission to make a difference in the lives of others and to honor their daughter, who they loved so much. And with that, here's Kate Durkee. Kate, I'm so happy to see you.
- [01:35]
Kate Durge
I'm so happy to be here, Leslie. Thank you.
- [01:37]
Leslie
Kate and I are in a very. Well, we were talking about the lighting before. They usually have like, surgery room lighting, but it's quite dim.
- [01:44]
Kate Durge
Very good for the complexion.
- [01:46]
Leslie
I know. Very good for our complexion. I'm sure it's 5 o' clock somewhere, but it's about 3:30 here. It is a conducive. This lighting is conducive to a cocktail lounge, but. But we prefer it. We prefer it.
- [01:59]
Kate Durge
We do.
- [01:59]
Leslie
It makes for a very relaxed environment. We were talking before Jess hit record in our booth there. It's like WKRP in Cincinnati over here with Jess in there and Kate and I out here. But you know, everyone who is lucky enough to know you and Chad and your entire family are always so in awe of you and your positivity and your resilience and how all of you honor Penny's legacy and her light and her positivity and everything that you do in your dedication to finding a cure for neurofibromatosis.
- [02:32]
Kate Durge
Look at you. You're Able to pronounce it.
- [02:34]
Leslie
It was quite a. It was. It was some. There were some stops and starts, I'm not gonna lie. But I'm very thankful that someone came up with the abbreviation nf.
- [02:41]
Kate Durge
Yes.
- [02:42]
Leslie
So we don't have to go through that. I don't have to mispronounce it.
- [02:45]
Kate Durge
No, you can use nf. But.
- [02:47]
Leslie
But before we talk about nf, tell. I know about Penny, obviously, but tell all those that are listening more about Penny, what a special person she was.
- [02:55]
Kate Durge
Well, Penny, oh, my gosh, where to begin? Penny truly was the brightest light with the biggest heart. And she was that kid who, from the moment she was born, Chad and I just looked at her and we knew she was special because she always had a smile on her face. And the minute she walked into the room, she just would light up the room. And she sort of was a Pied Piper to young kids because they just loved her and they followed her. Every was so kind. But she was funny. I mean, God, she was so funny and she was mischievous and naughty all at the same time. But, you know, she just lived the most beautiful, biggest life with this positivity and resilience. So she was truly, you know, a sparkling child and teenager. She had some, you know, faults with the teenage years, but she now is just this again. The brightest light in the sky and such an angel.
- [03:56]
Leslie
Tell us when or at what point you and Chad learned that she had nf?
- [04:01]
Kate Durge
Yeah, I mean, listen, this goes back, I think back to where it all really began. The night before Chad and I got married, my father, I've told this story before, but my father pulled us aside and said, listen, you both have lived this charm life. You have beautiful friends and you have beautiful family who are here, gathered here to witness your wedding and this wonderful weekend. But you will be challenged. And it's up to you how the two of you decide to play the cards you're dealt in life. And of course, we looked at my dad and we're like, you're really killing our vibe right now. We're going into a four day raging weekend. But with that advice, I kept that in my head and Chad kept it in his. And when Penny was just four months old, we lived in New York City, downtown town, and she rolled off our bed and she fractured her tibia bone. And the funniest thing is, is that she didn't even cry. You know, I think I was in the bathroom getting ready for work, and she rolled off our bed and I heard this thud. We raced to the pediatrician because her leg was super hot. And they sent us right up to hospital for special surgery. And it was at that moment that the orthopedic surgeon, Dr. Roger Whitman, who's our God and hero to this day, took one look at it, and he was like, listen, this is not only a fracture, but it's something much larger called congenital pseudo arthrosis. And we were like, what? One out of 300,000 kids have it. And not only is it that, but it looks like because this is so rare, it's under this umbrella of something called neurofibromatosis. So at four months old, we have really the first moment of child of ours has truly had something traumatic happen. And he was like, but don't Google nf. Let's just focus on her leg for the time being.
- [05:59]
Leslie
What was your feeling at that moment? Were you just kind of letting him be your guide and like, I'm not gonna. We're not gonna Google it, and we're just gonna take it one step at a time.
- [06:09]
Kate Durge
I think it was going back to my father's advice where it was like, okay, we've just been, you know, given this crazy news, but stop time for a moment and make a decision. How are we going to play this out? And it was a little bit of this faith over fear. And I just looked up at Roger Widman, who's much taller than I am. He's like 6, 4, 5. And I just felt like, okay, faith over fear. We're in the best hands. And if you're telling me, don't Google nf, and this is what we're going to do, we're going to go with it. And it wasn't blind naivete. It was more of. Of. I know hospital for surgery is the best. And he also suggested we go to Scottish Rite Children's Hospital in Texas. And he was like, I feel so confident about not only the diagnosis, but also what we are gonna do for Penny's leg that I want you to go get a second opinion. And so at five months old, we raced to Texas, and they basically were like, he's correct. This is what we would do for the leg surgery. And. And Penny had seven surgeries on her leg and wore a brace every day of her life, as you know. So I think we weren't. We didn't get into the weeds. We just felt this confidence of faith over fear. We're in good hands. She's a beautiful, happy baby. That's what has happened to her. Doesn't change her demeanor.
- [07:39]
Leslie
Well, I think you all and we talked about this a little bit before, but, I mean, from your friends watching on the outside, I had thought that maybe Penny had a. You know, kids have growth issues and they need braces or they need to have surgery on their bones. And I think most of us thought it was, you know, a bone related thing that she was, you know, working through, because it never held her back.
- [08:02]
Kate Durge
No.
- [08:02]
Leslie
In any way. And that, you know, is a testament to how you and Chad decided to respond.
- [08:09]
Kate Durge
Yeah. And it was that moment where, you know, we got the diagnosis and at four months old with the fractured tib bone. And then a few months later, we did get the test to confirm she had neurofibromatosis, but we just didn't want to define her life by a brace or surgeries. And that's really how we rolled it out, where we were just so determined to make sure she had this big, beautiful life. And that from the moment she had her first surgery, she was in a body cast for three and a half months at the age of 18. And we wanted to be a big, big, pink, bright, you know, body cast. And her casts were always bedazzling, I was gonna say.
- [08:52]
Leslie
And signed and all jazz.
- [08:54]
Kate Durge
Signed and jazzed. And, you know, she always had a bow in her hair, and hair was perfect. And it just was so important to make sure that life was normal. And I'll never forget, you know, there she was in her big body cast, and, you know, we would take her to the beach and we would take her on a. We put her on a swing somehow. But it was that feeling of like, we are not going to let this define her life. And therefore, she wasn't defined. And she. It was just who she was. And the braces she wore on her legs were beautiful, and they were bedazzled and they had butterflies. That's the craziest part.
- [09:36]
Leslie
Well, I want to talk to you about the butterflies, but I want to talk about NF for just a second, because you were saying that she. She had the test to confirm that she had it. And am I correct in saying it is the most common genetic disorder in children? Yeah, but yet there still is not.
- [09:55]
Kate Durge
And this is what is, you know, why we're on this mission now, because we, like so many other families, you know, when Penny was diagnosed with nf, we weren't focused on nf because when they told us she had it, you know, they said NF is the most common genetic condition in the United States, but it's the most unknown, because you can have a variety of symptoms or none. So for in Penny's case, you know, they said, yes, she has nf, but she only has congenital pseudoarthrosis, which is the bowing of the tibia bone. So we were just focused in that area. Some patients or some kids, when they're diagnosed, they may have cafe au lait spots. They may have, you know, topical tumors. And NF is neurofibromatosis, is the growth of tumors along the nerve pathways, so you can have them anywhere. So, for instance, you know, you get these annual checkups, your eye checkups, you get MRIs to see if there's growth of tumors anywhere in the body. So for Penny, we were fortunate in that she didn't have tumors anywhere, and it was just her legs. So I think people who've had this diagnosis focus on what they can focus on. So for us, it was focus on her leg and the orthopedic surgeries she had. So I joined the board of hss. I launched the annual fundraiser for pediatrics because they had been so incredible for us and were so supportive. So we didn't even think about nf. I mean, we just. It wasn't on our radar, and so we were not a part of the NF community. Not because we didn't want to be, but it was by choice of, this is what we're focusing on, and this is what we're tackling now. And again, we just. We didn't even talk about it, because what was the point, you know, if we weren't focusing on it, Penny wasn't showing other signs. But now, from everything we've learned and everything we've been through since penny passed in November 2020 22, it's unbelievable, these stories that you hear of some of these families and what they go through. And, you know, these kids from the.
- [12:12]
Leslie
Outset, managing the tumor.
- [12:14]
Kate Durge
Yeah. And, you know, these tumors that are benign, but then they turn malignant, and. And children who lose their eyesight or. Or children who have tumors all over their bodies to the point they are disfigured. And it is devastating to hear these stories, because there is no cure. And so there's no hope for so many of these families who are just trying to get through it day to day. And that's why we just feel like, this is it. This is what we've got to do. And, you know, Leslie, it wasn't until Penny developed the first brain tumor that we even thought about NF. It wasn't even in our mind for. For 14 years of her life.
- [12:58]
Leslie
And what. So you. Penny passes away in November of 2022. And you. And I remember, I mean, it was very soon thereafter, you just in awe of you and Chad getting the kind of emulating her spirit and focusing on this mission. Right. And starting the Penney's Flight foundation. And so tell me about. I remember the conversations after that. And the logo or the butterfly.
- [13:31]
Kate Durge
Yeah. It was such a journey. And I will say, as I mentioned, it wasn't until Penny was 14 that she first developed a tumor and it was in her brain. And for really two years, Penny fought it without anyone knowing. We did chemo and radiation and she just lived this beautiful life as we talked about. And she remained a counselor for her glam camp at the glam camp.
- [14:00]
Leslie
I wanted to be a camper at the glam camp. I tried to get a cabbage patch camp off the ground when I was around, a little bit younger than she was. People weren't paying. It was open. You drop your cabbage patch off and I would. Would take care of it. So all of the glam camp photos and the shots and all the stuff.
- [14:18]
Kate Durge
That she was doing was just incredible. Well, they were such little entrepreneurs, you know, Penny and her girlfriends, and they were always coming up with businesses. But glam camp was because it was coming out of COVID and taking care of these young girls. And then they did adventure camp where the next summer they included boys too. But point of that is that that was so Penny's focus with her girlfriends that she didn't let her, you know, she was going through serious radiation and she had to go into the city or we would take her into the city and she would get five days a week, 20 minute blasts. But we scheduled them at 7:30am so we could get in, get out, she could get to glam. And so she did that. So for two years, chemo, radiation, clinical trials, all of that and seven brain surgeries. So this is a kid who we talk about her resilience and her positivity. Never once did she complain through all of that. And so in the fall of 2022, she had had her seventh brain surgery and. And we went in for one more mri. It was like hundreds and hundreds of mri. And at that point, the interesting thing about a glioblastoma of an NF patient is that it can last, it can be contained longer than a non NF patient, which is actually interesting and something we're looking into in terms of scientific research. But there is a barrier around an NF glioblastoma that does not exist for non NF patients. So this barrier was there, and it allowed us to work with her surgeon to just pluck the tumor out. And that's what we kept doing. Every time we'd see an MRI and there was the tumor, it was back, you'd be like, we can get in, and we can take it out.
- [16:11]
Leslie
So it was not. So the edges were clean when the tumor was removed, because it was contained, because of the.
- [16:17]
Kate Durge
There was. Yeah, there was still a little bit there. But there was hope that if you get the tumor out, then we can treat the edges and we can keep treating the cells. And so that's really what we were doing October of 2022, and when we went in for that MRI, the barrier had broken, and that's when it had spread. And it was in that moment that I think Chad and I looked at each other and were like, this is it. But again, we were dealt cards, and to my father's advice, it was like, how are you gonna play it? So we scooped Penny up at msk. We brought her home. We filled the house with love and light and music. There was so much love in our house during that last week that, you know, friends have said, God, this is just like a love cocoon, and we're sending Penny off on a rocket ship of love. And it really was that recognition that there was so much support from our community, so much love from our friends and family, to your point, who had no idea. So when they would come into our house and they were just filled with such grief and sorrow and sadness, I'd run down the stairs, and I'd be like, hi, welcome. I'm so glad you're here. Come see Penny. You know, her girlfriends are sitting all over her bed, and our dogs are there.
- [17:39]
Leslie
Kate. I mean, as you're describing this, I'm, you know, trying to keep my act together over here. You know, I think that just the example that you set, I mean, just you kind of sublimating all of your own grief, right. And feeling inside, and just like, I'm deciding I'm gonna be positive, and I'm gonna send her off on a rocket ship of love and happiness and music. And, you know, there was people that were head of Food and Beverage. I mean, there was a lot of things happening, different committees.
- [18:10]
Kate Durge
Yeah. I mean, you see where personalities come through. But it was that choice, though, Leslie. It was like we have no other choice. I just felt like I recognized at that time what a difference we had made in Penny's life. Choosing joy from day one and not letting you know, the brace on her leg or the NF diagnosis or any of that define who she was. So I was like, we're just not going to let this moment define her passing. And also, I think Chad and I recognize what an opportunity we had to bring our community together. There had not been a loss of a 16 year old in our community. I don't even know when the last time was. So this was an opportunity to bring everyone together so that when Penny did pass, we had 30 people in our house downstairs. There was so much love, so much support. You know, she left us on the most beautiful November day. And it was also that moment that we were like, we have to celebrate her life. You know, we celebrated her life throughout the course of her life and her passing. And that's when we were like, okay, we're going to have a celebration of our life. We're going to have no one's going to wear black. We are going to play music. We're going to have the most beautiful flowers. We're going to have all of our friends and all our family come in. And that's what happened. I mean, when I don't even know how many people were there, but 1100, 1200 people who showed up and I think, think going to your question of, like, how did the formation of the foundation happen? It was that moment of Penny's final week, the celebration of her life on a Friday. Chad and I woke up on a Monday, and we looked at each other and we're like, we gotta do this. Like, we have this, this foundation of love and support and family and friends. And I think we both recognize that it wasn't because of Penny's congenital pseudo arthrosis. She passed. It wasn't just her glioblastoma. It was under the umbrella of this neurofibromatosis. And when we started to talk about that, because people were like, where do we support? Do we donate to hss? Do we donate to msk? Both of those organizations had taken such good care of Penny. We were like, no, no, no, no. We gotta go to the top of the funnel. We have to find a cure for this thing, because. No. And so we woke up on that Monday morning and we're like, all right, well, let's go. Let's launch a foundation. We're gonna find a cure for nf. And all of a sudden, we pulled in all those, like, food committees and music committees from the celebration of Penny's life, and the boys and we all came together and sat at the dining room table and we're like, all right, we're gonna do this. What are we gonna name it? And Henry Durkee was the one who was like, we're gonna call it Penny's Flight. And Chet and I were like, well, Penny's purpose. And he was like, no, but it's about Penny's journey and her life, and now it's about that continuation of her life and her journey. And so then it started to take off, and I was like, of course it's gonna be Penny's Flight. And, you know, our friend Tim Grant, who's not an illustrator, if he's listening, I love him. He's very creative. But he sat down and he did the logo.
- [21:35]
Leslie
Did he draw the butterfly?
- [21:36]
Kate Durge
He drew the butterfly. And so we recognized then, I think, with all of these powers and people coming to the table who had these beautiful ideas and, you know, logos and slogans, spread your wings and shine your light. It was coming together in such an organic, fast, real way that I knew this is Penny. Like, this is Penny making this happen, and we are her vehicles to help her, you know, and that's. It just took off. So with the logo, with the name, with, you know, the slogan, all of these things. We launched three weeks after Penny passed away, and it just started to roll and snowball and, you know, we had these Positively Penny pop up events. I had Jimmy Fallon doing the butterfly hands at some event.
- [22:29]
Leslie
I mean, you. By the way, I feel terror. I said, andrew, my husband, for listeners. I wasn't on Instagram, as you know, until this podcast, and I'm like, oh, my. I miss this. I miss this. I didn't know about that. It's like a whole thing happening that I feel like I missed out on some early Positively Penny events. But that energy and that love that was happening in your community, in your home and in your community during that time. And then following that time, you harnessing that and deciding, you know, within days to get the gang together. And all of your friends were so inspired. And you're still seeing that. Oh, my God, 18 months later. People, there's just no. There's no stopping Penny's up there, you know, moving mountains and making incredible things happen. So the foundation's focus is on a bunch of different things, right? Research, immunotherapy, collaboration, which I think is so critical. We could probably do a whole other podcast on that. Just the importance of that. And then seed growth funding, I guess, for this Children's Tumor Foundation. Is that another. To support their awards?
- [23:45]
Kate Durge
Yep. And I think for us, you know, as you were Talking Leslie, you know, I'm just thinking about, we set out to find a cure for nf. Really, that's, that was the premise here. But what transpired or what sort of evolved was this movement. And I am so proud of not only the funding that we have put towards research, which we can talk about in a moment, but it really started with this movement and going back to this idea of the positively Penny pop ups, because I, when people ask me, they're like, how are you doing this? You and Chad and the boys and God, what you've been able to do? I'm like, it's not me. It's not, it's. We, we all have done this. And I say this all the time to Penny's closest girlfriends who are part of our advisory group. I'm like, there is no way we would have been able to do what we have done in the last 18 months if it wasn't for you guys and you girls and this younger generation. Because truly, I can't underestimate enough or I can't explain enough the value that I attribute to the growth of the foundation because of what they've done. And it goes back to what you missed on social media, but these events, I mean, we had these, we had 15 pop up events the day we launched in various schools because these kids were so inspired to do something and I am so inspired by them because they recognize the impact that they can make. And this idea of spreading wings and this, you know, ripple effect that they have, it goes back to spreading kindness and Penny's life lessons of, you know, we talk about finding beauty and imperfection, right? Having, you know, positivity in the face of challenge and faith over fear. And what has come back time and time again, when I talk to these younger generation and Penny's friends and friends and friends who have said, you know, life is tough right now on, you know, college campus or high school campuses. So to be able to have an event where we're sharing positivity and the message around, you know, no one's perfect. So finding beauty in imperfection is really cool. And having this faith over fear that things are going to be okay no matter what challenge you're being faced with. And so I think the movement that has been created for the foundation has been one of the most surprising but beautiful things that have come out of this that we have, you know, 15 Penny's Flight Clubs across the country and colleges, high schools, and they're doing these fundraisers. So we have like puppy yoga for Penny, Pedal for Penny Painting for Penny. You know, thank God we named her Penny because it's like every iteration of Pee or you know, Play for Betty, Paper, Penny, all of that. And they're doing it on their own. So I get these DMs and these texts from younger generation. They're like, kate, I have this really cool idea. We want to do a mini Fam Jam concert. This is huge cred to Quinn Dougherty up at Colby College, who has a mini Fam Jam concert next Friday night, Play for Penny. It's a big fundraiser, but it's an awareness event. And so through social media, through these kids, friends of friends of friends, they've really grown this so that when we come back to raising the critical funds needed, then we go to our partnerships and that to your point about, you know, what are our pillars, it's our movement and spreading positivity and joy and Penny's story to raise awareness for neurofibromatosis, but it's really to fund these incredible organizations. So. And the research that they're doing. So one of them is Cold Spring Harbor Labs, you know, founder of DNA and an incredible, incredible organization or funding research. And they're in our backyard. So we got a call from Cold Spring Harbor Labs and they said, you know, we do so much genetic research. Were really interested in talking to you. And you're a young organization and young foundation with a lot of passion. And we find those are always the most interesting to work with because there's so much movement, awareness. And that was really exciting for us because we've developed this partnership with them. We're really excited about the research that they're doing. We've already funded a two year commitment of $1.1 million research project. One of the biggest things or most exciting things we're working on with Cold Spring Harbor Labs is their Banbury project. And that is where they bring in the top experts in any one field or any one topic to have a lock in. And it's sort of like this think, right?
- [28:43]
Leslie
Yes.
- [28:43]
Kate Durge
Yeah. So when you were asking about collaboration, we're all about collaboration. So we don't want to be that foundation that's siloed. It's about bringing in the best in this topic or what topic we decide that the research is going to be on. Bringing everyone in to have those learnings, what's working, what's not, what can we do together. So I think that is really at the base of our foundation is spreading wings to not only keep this ripple effect going, but bring people in.
- [29:18]
Leslie
I Wanted to comment on something you were saying earlier about not only your friends, you know, doing Positively Penny events or all of these young people doing things at their boarding schools or their high schools or their colleges, but you. You and Chad basically have allowed or given these kids a vehicle to take their own grief.
- [29:40]
Kate Durge
Yeah, yeah.
- [29:41]
Leslie
And you said faith over fear because it is so scary, right?
- [29:47]
Kate Durge
Yes. And there's no handbook.
- [29:49]
Leslie
Right.
- [29:50]
Kate Durge
That's the thing. Like, I didn't lose a friend, my best friend at age 16. So how do you explain what to do or how to react or how to feel to not only, you know, our kids, our boys, who, you know, Frankie was 11 and Henry was 18 when Penny passed away, but her very best friends who, you know, had grown up with her.
- [30:16]
Leslie
So giving them that vehicle is sort of teaching them the lesson and your whole community and all your friends the lesson of how you can take something that could be one way, deciding that you're going to take action and you're going to make it into something that's transformative and positive and beautiful. Yeah, it's really incredible to see. And there was a Penny's Flight event at the J. McLaughlin in Millbrook. So I went to pick up one of Penny's closest friends, Lily Grant, and I thought it was just going to be me and Lily going, and I invited some adults, but Lily brought some of her friends from school and who didn't know Penny. But to your point, about kids that didn't even know Penny wanting to be a part of something that's so positive and to learn more about it and to buy the butterfly pajamas, you know, all of that is just. It really has this incredible ripple effect. A really incredible ripple effect.
- [31:18]
Kate Durge
Yeah, it's been. I think, again, that's what's been the most beautiful thing for us. And, you know, there's nothing more gratifying, you know, certainly, to have Penny's legacy being passed on and on and on and on. But again, to see that these kids are rising up and it's not something we're not telling them to do. This is so organic in the sense that they want to do this, they want to be a part of it. And I think that it's helped them grieve. And for those that were super close with Penny, you know, it's helped them recognize, like, pain into purpose. Like, they can take that pain and put it towards helping other people. So it really has been incredible to see all of this younger generation coming in. And as I said, like, we have kids who didn't even Know, Penny who want to get involved and want to launch these clubs, and I think have been inspired by her story and recognize I can make a difference.
- [32:20]
Leslie
Yeah. And her example and how she led her life. So when you were talking about sort of all the different ways that NF can. Can present, is the genetic research, is that the focus or one of the main focuses and this partnership with Cold Spring harbor that you're focusing on through the Foundation?
- [32:38]
Kate Durge
Yeah, I mean, our hope is, you know, on a cellular level is really taking a look at how, you know, the. How these cells interact and with the NF cells and what we can do. You know, we do have a research project with Children's Tumor foundation, who's another partner. So between Cold Spring Harbor Labs and Children's Tum, and we're developing a partnership with the Gilbert Foundation. Their son, Nick Gilbert, passed away last spring from a optic tumor, and he was led to go blind and lose his eyesight. And so we're excited about the research that's being done. There are opportunities there to learn more in terms of what we're funding and how that can help other conditions. That's also part of the discussion with Cold Spring Harbor Labs as well. One of the things I will say when we're talking about the pillars of what we fund, obviously our research around, you know, genetic mutation and specific to neurofibromatosis. But I'm very proud of our partnership with Hospital for Special Surgery. And Penny, as we talked about, she lived in this big, beautiful life, and, you know, she wore this brace, but she danced and she, you know, skated, and she did all these incredible activities. And so when penny passed away, Dr. Roger Whitman, who was her doctor for 16 years, had founded the Adaptive Academy at Hospital for Special Surgery. This was years ago, and he was developing the program and building it out. And when Penny passed away, in her honor, he wanted to rename it the Penny Durgie Adaptive Academy, which for me is the greatest tribute, because the academy allows HSS patients to live a beautiful, normal life by giving them the opportunity to go skiing, adaptive skiing, go adaptive windsurfing, adaptive water skiing, adaptive painting, classes, like, all of these activities that otherwise these children wouldn't be able to participate in. Yeah. And wouldn't have access to, too. So not only was that an honor, but it's such a gift because we fund the PDAA and we raise money for the academy and to grow these events and evolve the academy. And having been to a couple of these events this past year, there's nothing more beautiful than seeing the joy and the smile on these kids. Faces who have cerebral palsy and they're in a wheelchair, and there they are skiing down Windom Mountain, and they've got, you know, this one boy who is there with his family. I spoke to the parents, and they were like, we don't ski. We never grew up skiing. But this is the one activity that we can bring, you know, our son and his brother and sister. And they're doing it together.
- [35:39]
Leslie
Yeah.
- [35:39]
Kate Durge
And it's just so cool, and it's so beautiful. So to be able to support the pdaa, certainly Cold Spring Harbor Labs ctf, and we're looking for more opportunities.
- [35:55]
Leslie
Well, I just. I love the fact that you are supporting not just, you know, the research and looking for the cure, but also efforts to support the children that are currently, you know, at HSS and just need sort of that. What's the word I'm looking for?
- [36:12]
Kate Durge
Well, to live a happy life. Yeah. And one of the things I want to be. Be sure I mention because I'm so proud of, again, you know, Penny's girlfriends and our advisory group, and when we set the foundation, we set out to obviously raise funds for the research and for pdaa, but we put aside a grant for the advisors or the advisory group to decide where they wanted to put their money. So this was for them. Yeah. And we said, you know, you do the research, you come back to us, you present it to us and tell us, you know, something that Penny would be really proud of, like something she would love. And as you know, Penny was an artist, and she was so creative. And so they found this program called Kids in Art, and it allows children, pediatric cancer patients who are at home, post treatment to have art kits sent to their home. So as they're recovering and going through that, they have these art kits that are sent to their homes. So it was a $10,000 grant, and they allowed for 750 art kits to be sent across the country.
- [37:22]
Leslie
I mean, Kate, you should almost have. Well, whether it's write a book or have your own podcast or your. There's so many different channels or vehicles that your experience or how you approached your experience and the incredible impact that it's made on others. I mean, just listening to how thoughtful you and the board, Chad, and whoever else is on your advisory board for Penny's flight said, let's have her friends decide how to use these funds. And what a great impact that they've made and what a great organization that they found.
- [37:57]
Kate Durge
Yeah. And such an incredible lesson for them. You know, to learn, but, but it keeps them involved. And my hope is that we do find. Not my hope, we will find a cure, find a cure for nf. But the reality is, as we get older, we need a younger generation who feels that they're a part of this and that they are involved and that they're making a difference. So while we talk about the funding and with Cold Spring Harbor Labs and these big organizations, we've wanted them to feel like they had something tangible where they could make an immediate difference. So that's been really fun. And that will continue. And you know, their grant will continue to grow as well.
- [38:39]
Leslie
Well, this month, May is NF awareness month. And in addition to, you know, these young people who are doing incredible things and making such an impact and having these events, some of your adult friends are doing some incredible things too. I'm wearing my penny loafers from Veronica Beard right now. But that's such an incredible, incredible initiative that Veronica Beard is doing. Do you want to tell people about that?
- [39:07]
Kate Durge
I mean, again, there's not enough gratitude or I can't. There aren't words to express the gratitude and love truly for all of our friends and community. And certainly, you know, brands who've come to the table to support us because they know they have the platform. And my gosh, the Veronicas, I just, just there aren't words to express my gratitude for them, but that what they are doing is a really beautiful thing. So they have this Veronica Beard gives back partnership or initiative where they partner with an organization for the quarter. So for us, it's April, May, June, and a percentage of all sales online goes back to the charity for that time period. And in addition, they do in store events. So for us, they have 34 stores across the country, Toronto and London. And we've been doing these in store shopping events where we have these co hosts come in, they invite their friends. You know, percentage of sales from that event goes back to the foundation. And so by the way, that has been the most beautiful thing because I have friends of friends of friends, people I don't even know who are hosting. So it's, that's been amazing. But then they have the penny loafer, which $50 for each sale. The penny loafer goes back to the foundation as well. So it's, you know, when we talk about spreading wings and the ripple effect and the platform they have given us from an awareness perspective, you know, aside from just the money and the funds that are, that are being raised, is really, really a beautiful thing. And we have other friends. Jay McLaughlin has been incredible, as you said. They did the collaboration with Print Fresh with the butterfly pajamas.
- [40:51]
Leslie
You have a big event happening in June.
- [40:53]
Kate Durge
Yes. Oh, my gosh. So Fam jam. Jamming with your fam. This is Chad's brainchild.
- [41:00]
Leslie
I was gonna say how. How is. By the way, what's the. The band.
- [41:05]
Kate Durge
Oh, oh, Wyclef.
- [41:06]
Leslie
No, not Wyclef. Powder and weed of my. The band.
- [41:09]
Kate Durge
Oh, yeah, the Garden Weasel.
- [41:10]
Leslie
The Garden Weasel.
- [41:11]
Kate Durge
Oh, my gosh. We need a reunion of the Garden wheel.
- [41:13]
Leslie
I mean, the Weasel should have. Have some kind of. Should they be the opening act? Warmer.
- [41:17]
Kate Durge
Warm up. Well, Kim Grant and Josh Grus and others.
- [41:20]
Leslie
Oh, are they doing.
- [41:21]
Kate Durge
Yeah, Liquor cake. Oh, now, excuse me, not liquor cake. Kantuck.
- [41:24]
Leslie
Sorry, Timmy, I've got a. Oh, I didn't realize. They've splintered off.
- [41:29]
Kate Durge
They've splintered off.
- [41:30]
Leslie
Oh, my God. I didn't know that Tim was like the Paul McCartney of the Garden Weasels.
- [41:34]
Kate Durge
He's getting a lot of air time today. Not only is he great of creating the logo, but he's also highlighting is the band.
- [41:41]
Leslie
But tell us about the famjan. So Whitecloth Jean is coming?
- [41:44]
Kate Durge
Yes. Okay, so Family Jamboree. This is our second annual. And this was really the Chad Durgie brainchild, where when we were talking about a fundraiser and granted, remember this was. We launched the foundation December 9th. Penny had passed away November 10th. And by February, we were talking about how we wanted to have a fundraiser, a huge fundraiser on her birthday, which is June 29th. And so Chad was like, I have this vision. You know, we grew up going to the Boston Pops and we'd bring a picnic blanket and all the kids would be running around, you know, kissing in the bushes. The parents would bring their picnics and listen to great music and drink and have a wonderful meal on a beautiful summer evening. So he said, I want to recreate that. All right, can you go? And so we brought in all of our people again, our committees, and we started to brainstorm and it was. Is just again this incredibly organic, beautiful thing in creating what we called the Fam jam or family jamboree. And last year we had 650 people at planning Fields Arboretum in Long island. And we had Donovan Frankenreuter, who we love, as our headliner. And we had Liquor Cake, who are friends from. And they were our opener. And we did these pop ups. So we had a glam tent, we had a merch tent, we had dodgeball. You know, HSS was there as one of our Sponsors. And so it was really awesome. And it was a beautiful night, and we did a beautiful drone show. So we raised $1.1 million that night, which was just incredible. And I love it because when we were in the formation of Fam Jam, Chad was like, all right, so we're looking at raising 300,000. I was like, we are looking at raising over a million dollars. And he was like, calm down. Expectations manage. And so this year is our second annual, and we do have Wycliffe as our headliner. We have Caroline Jones, who's amazing from Zach Brown Band. She has her own band. We have, as we talked about, liquor cake, and we've canned cantuk. And so it's going to be at Planning Fields Arboretum. We're hoping to have 850 people. We have food trucks. We have, again, a glam tent. We have merchant. We have a dunk tank. Lots of activities on a beautiful summer night on Penny's birthday, June 29th.
- [44:05]
Leslie
We're going. The Heaneys will be there. We will be there. So we've got the Fam Jam. What is next for Penny's flight? I mean, what are.
- [44:15]
Kate Durge
Well, we're gonna find a cure for nf.
- [44:16]
Leslie
Yep.
- [44:17]
Kate Durge
Yep.
- [44:18]
Leslie
And what are people who are listening that are also so inspired by your example and what you and all of those that love you are doing? What can people do to help for us?
- [44:29]
Kate Durge
Thank you. It's really about it's awareness. First of all, the fact that you can even pronounce neurofibromatosis is a huge step.
- [44:39]
Leslie
I like NF better. It works better for me when I'm.
- [44:42]
Kate Durge
Thrombologist, but it's spreading wings and it's spreading awareness and. Yes. And it's funding. It's, you know, get on board, come to FamJam. You know, we have sponsorships available. We have packages. We, you know, are trying to raise this awareness so that people hear these stories and recognize we all have an opportunity and we can do this if we come together. And that's really what it comes down to, is get on board, spread your wings, shine your light. You know, do this with us.
- [45:17]
Leslie
Live like Penny lives.
- [45:18]
Kate Durge
Yeah. Live like Penny lived. And that's a beautiful thing. I have people most days who text me and they're like, you know what? I woke up feeling like crap, and I thought, what would Penny Durie do? She would get up, she would go. She would live, laugh, and have a beautiful life.
- [45:37]
Leslie
You are such a positive person and such a strong person, but you probably have those days occasionally. Where you also maybe don't feel like getting out of bed. I know I have myself. But she must be such an example to you too. An inspiration to you, sort of thinking about, what would Penny do?
- [45:55]
Kate Durge
What would Penny do? And I say that to myself, you know, and it's interesting because, honestly, Leslie, I don't have a lot of days where I'm like, ugh, I don't want to get up every day. I'm like, I'm gonna put my two feet on the ground, and I'm gonna go. Because I've got. Had so much to do and not enough hours in the day to do it. But it also is. You know, there are those moments where it's like, what would Penny do? She would smile and she would move on, and she would choose joy. And we have seen that through and through from the day she rolled off her bed. Choose joy. Choose joy. Keep going. Keep. You know the diagnosis. Choose joy. And she would be told she had to have brain surgery and be like, all right, but we're gonna go river rafting in two weeks. Let's go. So if you can kind of have that North Star of choose joy and positivity, the difference that's gonna make in the long term is everything.
- [46:52]
Leslie
Well, Kate, you're an inspiration to me.
- [46:54]
Kate Durge
You're an inspiration to me. I'm so happy you've done this podcast. I love it.
- [46:59]
Leslie
I mean, it's a great excuse to get to see you, you know?
- [47:03]
Kate Durge
It's so fun. It is. I'm really proud of you, and you're doing an awesome, awesome job.
- [47:07]
Leslie
You're sweet. You're sweet. And. And for you and for me, it's very close to the train station.
- [47:11]
Kate Durge
Yes, exactly.
- [47:13]
Leslie
But I love seeing you. I can't wait for the fam jam. I don't know if what's it called? The. I can't believe there's these Garden Weasel splinter bands. Somehow I didn't get the nod for any backup vocals. We might need to.
- [47:31]
Kate Durge
We'll get you up there.
- [47:32]
Leslie
Oh, yeah, we gotta figure that out. But I'll be ready to. Ready to go, but. And I know it's gonna be a huge success, and I know with you and Chad and all of our friends and this incredible community that you've inspired, you know, you will find a cure. We will find a cure to Anna.
- [47:50]
Kate Durge
We will find a cure for Anna. So thank you. Thank you, Leslie.
- [47:54]
Leslie
Thank you, Kate. That brings us to the end of this episode of the interview. A huge thank you again to Kate Durge for joining and as always, thank you again for listening. If you enjoy the show, please rate and review us on Apple Podcasts and follow us on Instagram at the Interview with Leslie A new podcast is released every Wednesday and until then, this is Leslie, and don't forget to join the Interview.