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An episode of the Good2Give Podcast, hosted by Maria Walden Sullivan and DePriest Waddy of The Community Foundation for Northeast Georgia, features guests Kate Kelts, Senior Manager of Patient Education and Engagement, from the Children’s Tumor Foundation, and Mark Oppenheimer, CEO of Modern Executive Solutions and a board member of the foundation.
The discussion delves into the mission and efforts of the Children’s Tumor Foundation in researching and combating NF, a group of genetic conditions that causes tumors to grow on nerves.
Kate shares her professional journey and her current roles, including leading the NF registry and planning patient engagement programs. Mark opens up about his personal connection to NF through his daughter, Riley, and the emotional and practical challenges faced by families dealing with the condition.
The show highlights the importance of community, the impact of NF research on broader medical advancements, and the urgent need for funding clinical trials and treatments. The Community Foundation for Northeast Georgia’s role in supporting these initiatives and an urgent call to action for donations and support are emphasized throughout the episode.
The Community Foundation for Northeast Georgia powers the Good2Give Podcast. CFNEG works with donors and nonprofits to improve our community and our world through the power of philanthropy. To learn more, go to cfneg.org.
Read the transcript of the podcast below:
Voiceover: Broadcasting from the studios of Business Radio X, it’s time for the Good to Give podcast. This show is underwritten by the Community Foundation for Northeast Georgia, connecting people who care with causes that matter. Now, here is your host.
Maria Walden:
Welcome everyone. This is Maria Walden with the Community Foundation for Northeast Georgia. And I’m sitting here with DePriest Waddy.
DePriest Waddy:
Happy New Year, everybody. DePriest Waddy. President, CEO.
Maria Walden:
We are so excited. This is our first show this year.
DePriest Waddy:
First show of 2025, and we’ve got a big show for you today.
Maria Walden:
Yeah, we really do. We’ve got the Children’s Tumor Foundation based out of New York City. Kate Kelts is the senior manager, patient education and engagement. And so we’re so happy to have you here, Kate, and thank you for making time to share what is going on at the Children’s Tumor Foundation. And then we also have Mark Oppenheimer, who is the CEO of Modern Executive Solutions here in Atlanta. But he’s got a really unique story and why we’ve invited Mark is that this is a personal involvement with the Children’s Tumor Foundation, as is mine. And so Mark, you and I share that. I have a member of my family that has also been impacted with tumors. And so thank you both for making time and let’s jump in. Who wants to begin? I mean, Kate, do you want to talk about what the Children’s Tumor Foundation is?
Kate Kelts:
Sure, yes. Thank you, Maria. Thank you for having me here. I’m very excited to be part of the conversation. I still remember the first time I met Mark, and so it’s very fun to be here with him today. The Children’s Tumor Foundation is a nonprofit that focuses on funding research for a family of genetic diseases is how I often say it. NF is our shorthand for referring to all three of these conditions. And we are focused on just driving forward research but also funding it. We have a whole development team. We have our science team that is focusing us on the right projects and funding the right things. And we’re led by a really fantastic board of directors of which Mark is a part and they are business people, science people, almost all of them have a personal connection that really keeps them dedicated and focused.
Maria Walden:
That’s wonderful. Now tell us a little bit about your role.
Kate Kelts:
Sure, of course. My background is actually as a nurse. I’m a registered nurse and I came into this sideways, it’s a very nontraditional role for a nurse that I do now, but I first was a clinic coordinator for a pediatric neurologist in Los Angeles for about seven years. And she ran a large comprehensive center for children and adults with neurofibromatosis type one, as well as NF-2 -related schwannomatosis and schwannomatosis, which is why we call them NF for short ’cause those names are very hard to wrap your tongue around. And so I worked with Tina Rosser for a long time and I love this community. And when my family relocated, the Children’s Tumor Foundation reached out and said, “We don’t really have anybody on staff right now,” and this was about 10 years ago that when a family calls and they’re scared and they’re freaking out and they don’t know where to go or what doctor to see, they’ve had a new diagnosis or they’re worried about a diagnosis, nobody that can talk to them.
And so I came on really part-time just to do that piece. I loved it. It’s my favorite part of my job to this day. My role now has grown and expanded and now I’m the principal investigator for the NF registry, which is an online database for people living with NF all over the world to enter their information and be involved with research. I plan our annual NF Summit, which is a patient and family centered gathering where they can get education and connect with each other and they oversee our patient engagement programs, which is getting patients and families and caregivers involved at every level of research development to make sure that the needs of the community are being centered.
Maria Walden:
I know what NF is. Mark, we live it because of our family member, but tell us a little bit about what neurofibromatosis is. Those that are listening, educate them a little bit at a high level. And then, Mark, I want to hear how it’s impacted you guys.
Kate Kelts:
Yeah, absolutely. And I think Mark’s story will be really the most impactful here, but I’ll say that essentially NF, neurofibromatosis, it refers to these genetic conditions that cause tumors to grow on the nerves throughout the body. It can really occur anywhere, central nervous system, peripheral nerves. There are different types of tumors that might occur. They’re generally benign, which means not cancerous, but they can become cancerous. And just because they’re not cancerous does not mean they don’t cause very serious problems for the people who are living with them. And so it affects about, we say one in 2,000 births around the world. While it is considered rare it’s likely that most people maybe have met somebody living with NF and they don’t even know it. And it’s a lot for these families because there’s a lot of variability, which means that the way that it impacts one person is going to look different than how it might impact another person.
And so if you’ve got a young child with a diagnosis and you’re looking at the rest of their future, there’s just going to be a lot of question marks and a lot of unknowns that you’re going to have to face down as a parent or a caregiver or a partner. And so that’s something that in my job I try to really help support families through.
Maria Walden:
Yeah. Mark, I’m going to bring you in to this conversation, and I am so grateful to you for making time on your busy day. But not only are you a board member as Kate mentioned, but you are also impacted, and I’m sure that’s the reason, your place on that board. But tell us a little bit about you and your family and your story.
Mark Oppenheimer:
Yeah. Well, thank you. Firstly, it’s a pleasure to be on the program. I appreciate the time and I think it’s difficult to know where to begin really. I am on the Board of Tumor Foundation. I oversee the leadership development committee. I also oversee the junior board, and I’ve been on the board for a year. I’ve definitely dived head in. My background is I’m from the UK. I always wanted to have a family. My wife and I are both, we’re both very hard charging business individuals. We’ve built a large firm in the last four years in Atlanta called Modern Executive Solutions, which is an executive strategy and search business. Just being very real for a second, living with this situation is a living nightmare. I can’t say anything different. It is what it is, right? It’s funny, one in 2,000 kids have neurofibromatosis, yet no one’s ever heard of it.
It’s the best kept secret, which the head of marketing at CTF doesn’t love it when I tell him that. But look, at the end of the day, the unknown is the scariest thing in the world and no one telling you the only thing you want to hear of any high level of integrity that you care to hear it from is even more difficult. And I would say the Children’s Tumor Foundation is if you were going to put your money somewhere, this is where I would put it. And that’s not to do with the fact of what my daughter has. However, obviously the fact that I know about CTF is because of my daughter’s situation. To give you a quick run through of why and what I’ve been through, we found out that our daughter had had NF when she was about a year old.
She had a lot of what I call birthmark, but ultimately cafe au lait spots is what they’ve become to be known over her body. My wife didn’t think that much, but I thought that’s a questionable situation. I was like, how many people would you see with 30 birthmarks just walking around? However, she was having difficulty walking. She kept tripping. And so we took her to see a specialist about that, an orthopedic, they said, you know what? Her bones look fine, but you should get a check because she looks like she could have this thing called NF. But again, didn’t think that much of it. Went to get it genetically tested. Ultimately, the doctor had already told us by then he thought that she probably had it. And then I did the same thing that everybody does. You go on to Google and you see this terrible, terrible small percent of people who’ve, obviously social media, it highlights all the extremes, right?
You see the extreme and it scares you to death. And so your whole life from that moment is trying to walk it back to get some sense of normality. Now, I was very lucky to run into Kate. I found her, I always do speak about Kate. She was exceptional on that call, which actually very quickly led to deeper relationships and brought me onto the board. But the challenge is, for example, Riley, if you saw our daughter, she’s four now, if you saw her walking around or anything about her, you’d think she’s a completely normal kid. She has MRIs every three months, she has a glioma on her eye, which luckily hasn’t got any bigger. If it had, she would already be doing chemotherapy. Completely out of luck, we found this massive tumor 10 centimeters wide in her reproductive organs. She’s seen the top five specialists from every hospital around the world. And bottom line is, if it grows, which it’s probably going to, it’s unlikely it would’ve got that big without having grown, she will start having to go onto some serious medication.
And the challenge is these tumors, they’re so integrated into the body, you can’t really operate on them.
It’s like a stopwatch. Everybody knows that there’s stuff going in there somewhere. Some people will have a million things on the outside and nothing on the inside. Some people will have a million tumors on the inside and nothing on the outside. It is so variable. 10% of kids who have something significant on the inside will develop cancer. If they do that, the survival rate isn’t where we would like it to be.
So what it does is it just leads to a decade of absolute pain for parent, almost this sense of guilt that you’re hiding something from your own daughter because they’re happy, even though you know logically you’re not going to go and tell them this right now, they wouldn’t understand it, it doesn’t stop how you feel. What I have loved about the Children’s Tumor Foundation, there is a lady who runs it called Annette Bakker, and forget about… I really appreciate what the organization has done around patient advocacy, but at the end of the day, it is a research organization and the impact it is having is significant.
So to give you an idea, one in 2000 people are affected, right? That’s one in 2000 families are going through living hell. It could be more than that, based upon not knowing about it. Two years ago, a major reason why the first ever FDA approved drug called koselugo was released, was because of the Children’s Tumor Foundation and the investments that were made. Today, there are many clinical trials going on because of the network Children’s Tumor Foundation has built. And so when you look at this, Annette, the lady who’s the president she’s not just trying to cure NF, she’s actually utilizing this money to try and find the methodology to cure all rare diseases.
The challenges with rare diseases, as everybody listening to this will know is unless your kid has one, you don’t really care about them, right? Because every other rare disease, I would give some money to it, but it’s not where I’m going to pour my life into. Obviously the challenge with this, what we’re talking about is, all of the things up until recently that have come out to look after kids who have NF, who have massive tumors or dangerous tumors, come out of the oncology department. So everything is radiating your child to some degree or another.
So to sum all of that up, I would say to me, it’s a massive call to action to anybody out there who really cares about being able to make a big impact on a large community of people who would give their own lives up in a second to be able to find a cure for their children. And so that’s why I’m very proud to be on this. That’s why we have a very strong executive network of which we exercise regularly to try and find a solution to this challenge and to anybody who’s listening to this, I am 100% available at any time to connect with anyone, any place.
I’ve taken up the whole concept of ‘whatever it takes,’ because that’s the only line I use around this. Whenever I’m thinking about posting something, whenever I’m thinking about going somewhere and I’m thinking about how this will affect my business, the only thing is, whatever it takes to look after my daughter, as I’m sure a lot of people understand, it is what I will do.
Maria Walden:
Yeah. So Mark, and I’m so sorry. And how old is your daughter?
Mark Oppenheimer:
She’s four.
Maria Walden:
She’s four. I think you may have said that. This is a genetic disorder, so does this run in your family, your wife’s family? How did she…
Mark Oppenheimer:
No. It’s spontaneous. 50% of them are spontaneous. Although I have to say, I haven’t met many people it’s not spontaneous. One of the bigger challenges there is, a lot of the people who have it don’t know they have it, or they can’t necessarily afford the contraceptive methods necessary, like IVF, to actually guard against passing it on and therefore it gets passed on and the parent might not have many problems and then the child has huge challenges suddenly. And it’s, again, for being a parent that is very, very difficult. But 50% spontaneous and that’s my situation, Maria.
Maria Walden:
Yeah. Like I said, I have a family member that’s impacted lots of [inaudible 00:14:19] café au lait spots, and that’s how it was detected originally. Kate, just you see a lot of different patients, it sounds like. And as Mark described, tumors form on three different areas, your spine, your brain, your skin. And I know this is considered a rare disease, but wanted to get just… Because of being a nurse, what do you look for? What does that mean when you have a baby, they have birthmarks, like Mark describing? What’s the process? What do you look for?
Kate Kelts:
Yeah, great question. Mark has done a fantastic job explaining so many of the complex issues around NF, and so as he said, about 50% of people that are diagnosed with NF1, it’s the first person in their whole family to have it. The gene that the NF1 change happens on is huge, and so that is why there can be… If you think about your genetic system as coding, you get a letter out of place and it’s NF1, right? And so that’s part of why we know that it’s more common than some of the other rare diseases because it has this big opportunity for a small change to cause a big problem.
And what I’m hearing from families, almost always it’s what Mark experienced, which is a doctor, maybe it’s a pediatrician, in their case, an orthopedic guy that they were seeing because of Riley’s walking development, notices those, what most families call birthmarks. The clinical term is café au lait spots. You’ll see just capital C-A-L-S, cals, is how we refer to them in the shorthand. They really are just birthmarks. The café au laits themselves do not cause any problem, other than that they can be cosmetically frustrating for patients and families, if there are a lot of them, but it’s often the first sign.
We often think of NF1 as a clinical diagnosis. And so what that means is that there are a set of clinical symptoms that folks will show up with, but those occur as a child is growing older and so often the first thing we see is those birthmarks. Then we might see what we call lisch nodules, which are a very fancy word for essentially birthmarks in the colored part of your eye. Again, they don’t cause problems. They don’t lead to blindness or vision issues themselves, but they can be a sign of having NF1.
They also develop some, not everyone, again, one of the frustrating things about this condition is how different it is for everyone, they can develop what we call cutaneous neurofibromas, which are small tumors that grow on the nerves just under the skin. So a lot of times they seem like skin tumors, but they are attached to nerves and you can have a couple, you can have hundreds. It really depends. They tend to mostly be located on the trunk and extremities. We do have people who have them on their faces, and obviously that’s a huge frustrating thing for them. They’re difficult to remove. They can be removed, but they can come back. Obviously there’s scarring involved, so finding innovative treatments for those is very important.
The Children’s Tumor Foundation Listening Session with the FDA last summer, where we brought in six patients with NF1 who have a lot of cutaneous neurofibromas, basically to have the opportunity to tell the drug administration, “Hey, if you get a drug that comes here to you for approval that would treat this, we want it. This is the risk we’re willing to take. This is why it’s so important to us,” because those cutaneous neurofibromas are often seen as just a cosmetic issue, and that’s absolutely false. It’s a very serious part of NF1 for many, but not all patients.
The optic gliomas that Mark mentioned that Riley has, those are benign tumors that grow on the nerve behind the eye. It could also be a sign of NF1. For many, many children, they don’t get bigger or they don’t grow much at all. Sometimes we see them disappear almost entirely without any intervention or treatment. And unfortunately, for another set of children, they do grow and they do require treatment. And again, we don’t know. We can’t predict it, which is very frustrating.
So these are some of the things that we might see early on when families are coming in to start. And I do like to say, whenever I speak publicly about this, that having a birthmark does not mean that your child has NF1. One of the requirements is that they have six or more birthmarks that are each a half a centimeter in diameter or bigger. And the reason for that is because birthmarks are a very normal finding in the entire population across the world, and it’s when we get to have seven, eight, 10, 30 birthmarks that we start to say, “There might be something else going on here.”
Maria Walden:
Yeah. Wow. Okay.
DePriest Waddy:
So I’ve got a question for Mark because I know, Mark, we want to be respectful of your time. I know you described it as just being debilitating for your daughter Riley, but can you share with us what a typical day is with your family? Because we know that the cadence of the family probably spends quite a bit of time around supporting Riley in this journey, but can you give our audience just a sense of what a typical day looks like for you and your wife?
Mark Oppenheimer:
Yeah. I’m not sure if it’s all going to be related around NF, but it also makes me seem like a workaholic. So I get up at four A.M. and start working. Riley usually knows that, and she’s up at 5:30 with me, in which I’m a terrible father because I let her just watch my iPad for an hour and a half each morning. But then ultimately, she goes to Peachtree Presbyterian, which we love, by the way. In fact, they have an inclusion program, and I would say Riley is on the cusp of whether or not she actually needs to be in that, but at the same time, that is a great school. It’s only three hours a day. So if you are both working, don’t expect it to cover everything. But wow, that was a great school. Anyway, she goes there. I think she really likes it. She comes back. She usually then goes, she has a PT session three times a week. She has two appointments each day of the week apart from Friday between occupational therapy, physical therapy, speech therapy. And she does also this thing, Little Heroes where she rides a horse, which helps with her stability, which is really cute, down in Chastain. So she’s really in and out of appointments most of the day.
The great thing that I would say, honestly, around CHOA, Children’s Hospital of Atlanta, to be honest, all the other ones we go to too, but I just find that whole community, which is where a lot the help come from, is just, they’re so good with children. I mean honestly, Riley has a great life. She wouldn’t know anything was wrong and her walking, her physical therapy, she’s getting so much better at all of that stuff. It’s us behind the scenes. She doesn’t know why she has MRI’s every three months and she probably doesn’t even know she’s being put to sleep, right? All we ever talk about is the IV, which is this ongoing discussion about, I like the IV, I hate the IV.
But for Michelle and I, it’s just one of those things where it’s hard to ever look at Riley for me and ever feel quite the same. I remember I spoke to the chairman of one of the big medical organizations whose kid had something similar and he said to me 20 years later, “From the day I found out about the diagnosis, my life has never been the same.” And that’s just the way it is. Your goals turn from all of this stuff around personally to, I hate to say this because this is very morbid, but one of my biggest goals is to outlive my daughter. That’s a goal. And then you can’t let yourself fall to the side of thinking the worst because you can’t physically take that. You just can’t.
So for me, it’s an interesting situation because being on this board… Being on a non-profit, I would say is actually, having had experience both being on a non-profit and a for-profit board, being on a non-profit is much tougher because you’ve got a lot more emotion involved in it, and everybody wants an answer in a big way and everybody’s there for a reason. So I don’t really know if that answers your question.
DePriest Waddy:
It does, it does.
Mark Oppenheimer:
Also, the other thing I would say is when you don’t know if you’ve got a finite timeline with your daughter, you don’t know. You hope you do, you hope it’s not finite, but you feel guilty whenever you’re not with them. But you kind of feel guilty whenever you’re doing something else. You’re like, well, if I turned around in three years and something’s changed, am I going to basically regret every moment that I decided to do this when my daughter was in the house? You can’t just stop your life. So it is just weighing all of these things up. It’s great to have a good therapist.
Maria Walden:
Yeah, I agree. I’m just going to echo what you say, my family member in that, yeah, every day it’s like that. You don’t know what will happen and it impacts everyone, the entire family, grandparents, everyone.
DePriest Waddy:
I’m seeing a big celebration of very small wins and I applaud you and your wife, Michelle, on this journey of magnificent small wins. And Riley is a trooper.
Maria Walden:
And there is a great team here in Atlanta at the Children’s Healthcare of Atlanta, there’s one in CHOP, which is the Children’s Healthcare of Philadelphia, which they have an NF wing that is specialized to this. But anyone that’s listening that has a child that has some considered rare disease or something that could be debilitating, you get this because you do, you think about that child and there are so many different disorders unfortunately our children are having to be faced with.
And Mark, you mentioned a clinical trial. In fact, my family member was in that clinical trial and it’s done really, really well. And so I am so glad that it’s out there. But one of the reasons the Community Foundation for Northeast Georgia is even involved is we got to find a way to raise money for more trials, more that pharma has, and Annette is leading the way with what pharma has on their shelves and she can kind of spearhead to all different types of rare diseases, not just NF. And Mark, you said this is kind of the best hidden, there’s so many others that, and I know that the focus of just tumors, finding solutions for all different types of tumors. So like DePriest said-
Mark Oppenheimer:
Maria, I would just say just on that though, I would say one of the things around this is a lot of the rare diseases, you’re at the beginning. This is something where a lot of work’s been done and honestly, considering what Children’s Tumor Foundation can do with 25 million a year, if Annette had a couple of hundred million dollars, I guarantee that that money would actually make a huge difference to curing this disease in the next five years. It’s at that stage because of all the work that’s gone in, and that’s why I’ve been thinking about different family offices and things like that because they do put some money into philanthropy. But if we could raise just a couple of hundred million, that person could individually play a major part in saving the lives of hundreds, thousands of children. And because it is common, it’s not that rare, it is a huge deal if somebody does that because of just the sheer impact it’s going to have on children all around the world.
So I don’t mean to interrupt you, but I just want to underline that point that we’ve got a venture philanthropist fund for one reason, money’s pouring into the space now because they’ve seen success. You’ve got an FDA approved drug, right? And when it’s one in 2000 kids, that’s an awful lot of money that can be made by someone who finds a cure to this, or even finds good therapies.
Maria Walden:
Agreed, agreed. Mark, I know your time is limited with us, but I know it’s at your call time, but you need to go. Thank you.
DePriest Waddy:
Thank you, Mark.
Maria Walden:
Mark, you said at any time, you’re always available. How would someone reach you?
Mark Oppenheimer:
Yeah, I mean, look, we invest in the community for this. We’ve put money to bring all of the people who have NF together once a month through CHOA. That’s been enabled by my wife and I. We’re helping to build the actual platform for Dr. Wolf, we’ve helped him to hire people. We are all in. If anybody wants to talk, best option is probably to reach me at a personal email address. Do you want me to just share that?
Maria Walden:
Yes, please.
Mark Oppenheimer:
Yeah. So it is nice and simple. It’s MarkOppenheimer, if you don’t know how to spell Oppenheimer, just the movie is the way you spell it, markoppenheimer1358@gmail.com.
Maria Walden:
Thank you.
Mark Oppenheimer:
Just send me an email. I would say call me, but I’m not very good at getting back to people. Send me an email. I will get it and I will make sure I come back to you.
Maria Walden:
You’re awesome. Thank you, Mark. And I know we’ll be seeing you soon and just grateful for all the work you’re doing in the community.
DePriest Waddy:
Thank you, Mark. Have a nice day.
Mark Oppenheimer:
Thank you so much, everybody.
Kate Kelts:
Good to see you today, Mark.
Mark Oppenheimer:
Likewise.
Maria Walden:
Enjoy your day. Kate, thank you for staying on for a few more minutes.
Kate Kelts:
Of course.
Maria Walden:
So tell us a little bit about what is going, I mean, I know that Annette, the CEO, is really focused on… And I love what Mark was saying because I really wasn’t aware that it really could help in the next five years if we were to raise enough money to find a solution for this. So give us a little, and then we’re going to talk about what we’re doing and why’re the Community Foundation for Northeast Georgia is involved because you’re obviously in New York, but why we’re a part of that. But if you could give us a little bit of insight on that and then we’ll showcase what we’re needing from everyone a call to action.
Kate Kelts:
Yeah, wonderful. I’m happy to talk about that. One of the things that Mark alluded to, and I wanted to really clarify or highlight I suppose, is that the fascinating thing about funding NF research is that it’s actually applicable to hundreds of other conditions. The thing that’s happening in NF is that everyone has a tumor suppressor gene. Ironically, it often surprises people to find out that you actually have a gene that tells your body not to make tumors, and that gene gets bad instructions in people with NF, and so then they’re making tumors. And the research that’s going on and the way that we’re looking at solving this issue is going to be applicable outside even just of the world of NF.
And so it really is a very high impact place to put your time, your energy, your money, because not only is it the most common rare condition, so as Mark said, you’re affecting millions of families if you get involved in this with CTF, but you’re also affecting people even outside of those living specifically with NF as we find more and more potential treatments for the future. Also, what I love about working with CTF, and I’ve been here for 10 years, is the fact that Dr. Bakker, our CEO, is so focused on good science and what she calls open science, which means we have to share the research when it’s working and we have to share it when it’s not working. We got to stop wasting time repeating the same old kind of mistakes with more and more research projects and clinical trials.
Because within the world of science, what’s often surprising to people is that scientists and researchers are motivated, externally motivated, to keep their work secret and private because of issues around getting credit. And I don’t mean to make them sound selfish, it’s really much more complex than that.
But what Annette is doing and with CTF is creating an atmosphere in which there are huge rewards and encouraging reasons for scientists, for researchers, for clinicians to openly share the work they’re doing and the results, whether those are results that are exciting and moving toward a cure, or results that are telling us that we’re on the wrong path, and we need to go in a new direction.
And that really is the culture at CTF, which makes it one of the most powerful engines for really driving forward to find treatments and a cure for NF. And I truly believe that, which is exciting to be a part of the organization and knowing that that’s the case.
Maria Walden:
Yeah, thank you for sharing all that. And when I spoke with Annette, she really is dedicated, as you said, with her team and you, everybody that is so focused on finding the solution.
And I’m going to just share what we’re doing, the Community Foundation for Northeast Georgia, even though we’re in Georgia and you’re in New York, you have an office in Belgium as well. Is it in Brussels?
Kate Kelts:
Yes, Brussels. That’s correct.
Maria Walden:
Brussels. So you’re worldwide. I mean, this impacts so many other people just across the world, and it’s not, I mean, there’s nothing to do with race or gender or anything. And look, just Mark and I both, and sitting in the same room, basically, he was on web, but two people already that are impacted with NF.
So we, at the Community Foundation for Northeast Georgia with our fearless leader, DePriest Waddy, being so innovative, we reached out to Annette to see how we might be able to help with this. I knew Dr. Wolfe is really instrumental here in Georgia, but there are many other places that are also being impacted.
But we’re helping to raise money, and the call to action is this. We, as a community foundation, we help non-profits grow. We help them with education, we help them with finding financial solutions with a lot of our fund holders, and I’ll let DePriest talk a little bit about that.
But we’re really dedicated to being the beta to help find a different way to fundraise, and that is opening this up to our fund holders, to the world. Like how can we make a difference? How can we showcase this in a bigger way? And so, we are really dedicated to helping Annette, and she’s trusted us to helping make this difference in doing this beta.
DePriest, do you want to jump in? Because I know I’ve been talking a ton today.
DePriest Waddy:
Well, first of all, I want to applaud Kate and your thoughtful leadership around this initiative.
When Maria shared with me that she and Annette has spoken, I knew that we wanted be a part of this. This is something that affects everybody. I mean, we might not be in the throes of it, like Maria’s family and like Mark, but it affects our children around the world particularly, and we want to be a part of the solution.
And so, when Annette expressed the vision of launching this campaign, and with us having Mark and others in this particular geographic, we wanted to be able to serve as the fiscal agent around those funds, and we want to be able help evangelize and spread the word.
You provided a lot of nuggets from the ground up. Because I think in this conversation today, I think as Mark said, a lot of folks can basically push away from the table and say, “This has nothing to do with me.” But when you deconstruct just the fact that we all have a tumor gene that keeps us from producing tumors, that resonates with me. Because any of us could have a faulty tumor gene, and it’s something that could creep in at any point in time. So we got to get in front of this. We got to find a cure. We got to give relief to our families and our children.
And so, as we share the word and we share this podcast and we share these messages, I’m inviting everybody to become a part of this campaign in order to help us to have better clinical trials and better research and improve drugs that can deconstruct and eradicate this terrible disease.
Maria Walden:
Right. Well, I mean this product is sitting on pharma’s shelf, as I think somebody mentioned, and that, I mean, really just really redirecting monies.
You know, DePriest, and you said it really does, it impacts a lot of people. But even with my experience, it’s impacting you because I could take off.
DePriest Waddy:
That’s exactly right.
Maria Walden:
No, I mean it does. It kind of dovetails and it grows.
And Mark, probably everyone that he touches, it probably impacts them in some way. Because the people that are in our lives are impacted by it, even though it’s not really close, but you begin to care more.
Yes, Kate, I can tell you wanted to say something, but…
Kate Kelts:
Well, that’s why I’m glad I’m on Zoom so you can see me because I was just-
Maria Walden:
I can see you smiling.
Kate Kelts:
I know. I was going to say that.
That’s the thing about rare disease is that it really is about community care because once you know someone who is affected, whether it’s a neighbor, a child of your own, a student in your class, if you’re a teacher, it could be an adult that you know from your gym. I mean, there’s so many ways that you might connect with someone and really weaving people together and creating that sense of community is really what we need.
And what is so interesting about NF is that it really is one in 2000, meaning that it doesn’t discriminate based on race or gender or where in the world you live, or there’s nothing that prevents you from potentially one day being impacted in some way. And so, we love Mark’s message and your message, DePriest, just now of that there’s an urgent need here in this community, and it really is such a widespread impact when you get involved.
Maria Walden:
Yeah. We are so grateful to be a part of this.
But yes, we are the fiscal agent for this particular campaign. We’re raising as much money as we can. There’s an annual campaign, but there is another campaign, but we’re not even going to say a number out there. Because, hey, every amount counts, and so we’ll take anything. Let’s find a solution. Let’s find a cure. Although then, you wouldn’t have a job, Kate, and-
Kate Kelts:
You know what? That’d be the best reason to lose my job that I can think of, so bring it on.
Maria Walden:
Yeah, I guess so. Okay, bring it.
Kate Kelts:
Put me out of work.
Maria Walden:
Anyway, anyone that’s listening, we’re going to showcase this on all of our social media. It’ll be on our website. We’ll share this with Tumor Foundation, the Children’s Tumor Foundation. They’re going to share it, but you’ll be hearing a lot more from us in how we’re going to attack this.
DePriest Waddy:
And there’ll be a link to how folks can give, right?
Maria Walden:
Yeah, absolutely.
DePriest Waddy:
Right.
Maria Walden:
We’ve got a link through the Community Foundation for Northeast Georgia.
Any questions anyone may have, please contact me. You could reach me at the Community Foundation for Northeast Georgia. I think everyone knows that, but it’s mwalden@cfneg.org. Or DePriest?
DePriest Waddy:
Mm-hmm. dwaddy@cfneg.org
Maria Walden:
Kate, do you want to share yours?
Kate Kelts:
Yeah, I would love to. So you can reach me. It’s my first initial and my last name, so it’s kkelts@ctf.org. That’s my email.
You can also go on YouTube and look up CTF Ask Kate, and there’s tons of videos on there that are educational and can tell you all kinds of things about NF so that if you or someone you know is impacted and you want to learn more, that can be a great way to start.
Maria Walden:
That’s amazing. I did not realize that. I’ll definitely be looking at Ask Kate, too.
DePriest. Any final words?
DePriest Waddy:
I just want to say this has been one of my most enlightening podcasts because I learned so much new information today and also some new and innovative ways as to how we can roll up our sleeves and get some healing, get some healing blessings in the atmosphere.
Maria Walden:
Yes. Absolutely.
DePriest Waddy:
So Kate, thank you so much for joining us. And thank you, Mark, in your absence, for giving us your time as well.
Maria Walden:
Yes. Kate, thank you so much. You’re delightful. And look forward to getting you, you know, remove your job from you.
DePriest Waddy:
Yes.
Maria Walden:
So we’re going to get you unemployed. That’s our goal.
Kate Kelts:
Love it. I love it. Thank you.
And thank you for having me today. This is a lot of fun. I love talking about what we do, so thanks for having me.
Maria Walden:
You bet. Thank you.
This is Maria Walden, DePriest Waddy from the Community Foundation for Northeast Georgia. We look forward to speaking with you and hearing from you soon.
Voiceover: Thank you for joining us on the Good To Give podcast. This show is underwritten by the Community Foundation for Northeast Georgia, working with donors and nonprofits improving our world through the power of philanthropy. For more information, go to cfneg.org.
