non-profit spotlight | curing kids cancer

Grainne Owen | Curing Kids Cancer

Hannah: Where are you from? Where do you live now? 

Grainne: Okay, complicated questions. I was born in England, but my parents, my brother, and sister were all born in Ireland, but they moved to London the year before I was born. So, born in England, English accent but really Irish. And then I moved to Atlanta with my husband 24 years ago. Last year we moved from Atlanta to Dallas because of AT&T. 

Hannah: That’s where your husband works? 

Grainne: That’s where we live now. Texans. Austin, Texas. 

Hannah: If you’re ready I’ll go ahead and get started. 

Hello everyone and welcome back to DWGTV, I’m Hannah and today I’m joined Grainne Owen, who is the co-founder of Curing Kids Cancer. Today we’re doing a nonprofit spotlight on them and really sharing how this nonprofit came about, how it’s evolved since the beginning and how digital marketing has played into its success. 

If you want to start off by introducing yourself and just kind of sharing what it is that you do at Curing Kids Cancer. 

Grainne: My name is Grainne Owen, and I founded Curing Kids Cancer after I lost one of my little boys to Leukemia when he was 9 years old. There was a job that probably would have saved his life, but the doctors didn’t have the money to get out of the lab and into treatment. After we lost him, I just felt like I was supposed to do something about that. You know, you fight so hard when your child is sick, and I just felt like I wasn’t ready to give up fighting even though it was going to benefit Cillian anymore, but I know so many people who are still battling it and I couldn’t stand the thought of them being in the same position that we were where they might lose their child just because there wasn’t enough money to get the drug to the child. 

I started raising money in 2005 and we are about to hit the $15 million-dollar mark. It’s a huge milestone for us. When I started raising money at my kitchen table I never dreamed that I would be able to raise that much money. 

Hannah: How did that get started? How did you decide, “This is what I’m going to do?” How did it start from just an idea and something you’re passionate about to bringing that idea to life? 

Grainne: Well it was kind of a gut thing really. I was sitting with my 3 boys, because Cillian was a twin, and then I’ve got one older boy and one younger. It was coming up to Cillian’s first anniversary and I didn’t want them to feel bad and so I was sitting and telling them that we shouldn’t feel bad because Cillian was healthy and happy and not in pain anymore and that God was looking after him better than we ever could, even though it wasn’t what we wanted and it wasn’t where we wanted him to be. And I suddenly thought that if I believe what I’m telling my children then I shouldn’t be sad and angry and depressed. I remembered at that moment the drug that was stuck in the lab. It was funny because, at the time when the doctor told me about it, I wondered why he had told us because we couldn’t have it. So, what was the point in telling us that there was a drug that might have saved him? But that was why. I was supposed to know that and I was supposed to remember that at that moment because I knew that that was what I supposed to do. 

The one thing Cillian could not stand when he was sick was me being upset. So, I thought, “Okay it’s time that I made a decision to do something positive.” We had a coach at that time who had told his team not to buy him a gift at the end of the season, and to donate the money to the hospital where Cillian was treated. I remembered that and I thought that is a great way for us to raise money; it’s unique and different. We asked sports teams at the end of the season, instead of buying a traditional gift card for the coach, if they would donate the money to us. We actually had t-shirts and hats and whistles made with our logo on, so the coach still gets a gift but the majority of the money comes to us and goes to research. 

We started in the fall season sports season and I thought maybe we would raise about $5,000 if we were lucky, and we actually raised $45,000. I was like, “Okay this is a good idea.” It was a better idea than I thought. That was how we got started and I just sat at my kitchen table and I emailed every single sports organization that I could think of that might listen to my story and might understand why I was doing what I was doing and might want to help. I wrote my story down and sent it out electronically to everybody I could think of and people started to help. 

Hannah: Wow that is an amazing story. Did you have any idea of what starting a nonprofit looked like? Any experience with that? How was that process like co-founding this nonprofit with your husband? 

Grainne: It was daunting because I had no clue. In fact, I came from a career that was the total opposite of that because I used to work for the London stock exchange, which is like the most for-profit organization you can probably think of. To start a nonprofit, I had no clue what I had to do but we had a lawyer friend who helped us for free, we had an accountant friend who helped us for free and they all helped us register with the IRS because I wanted to do everything properly. I didn’t want to be one of those organizations where people give their money and then discover it’s not legit. I was like, “No, because this is for my child. I’m doing this in his memory, so it has to be exactly right, and people have to believe in what we’re doing and believe in us.” So that’s how we got started. I stayed up until 2 o’clock in the morning sitting at my kitchen table just doing research on sports and organizations and youth sports and anything you can think of. 

Hannah: How has Curing Kids Cancer evolved since that beginning of you sitting at your kitchen table, staying up until 2 am and now you have a team and you’re incredibly successful. How has it evolved? 

Grainne: Well, there are five of us now, so it’s still not a big organization by any stretch of the imagination. But that’s what I wanted. I didn’t want to be spending money on overheads and marketing and all sorts of things like big salaries for people, because that’s not why I was doing it. I feel like you can’t ask people to donate their money to research and then spend it on other things. We keep our costs to an absolute minimum. Our maximum is 15% of admin and 85% goes to the research; we keep that as our limit. Quite often we come in below that, which is good. 

I set up a medical advisory board because I wanted to get the best people possible to be looking at where we should give the money that we raised because there’s no point in raising lots of money and then not knowing what to do with it. I actually asked my two son’s doctors at the National Cancer Institute, they were the head of Pediatric Oncology there and I said, “Would you chair my medical advisory board?” And they said, “Yes.” I said to them, “If you had a dream team, who would you pick?” They gave me a list of names and I said, “Don’t be upset if some of them say no, because they’re busy,” because these are the best doctors in the country as far as we are concerned. And everyone said yes, so we got our dream team. We started out with a fantastic medical advisory board and it just kind of went from there. 

We started a partnership back in 2012 with Mecum Car Auctions. They are the largest classic and muscle car auction house in the world, and their auctions are televised on NBC sports. I didn’t know a thing about cars or car auctions but somebody had donated a motorcycle to the charity and I was like, “What do I do with a motorcycle?” But luckily, the making of the bike was being filmed on The Discovery Channel, and the producer said, “Well Mecum is also on The Discovery Channel, let me ask them if they would auction the bike for you when it’s finished,” and I was like, “Great!” So, they did. I went to the auction, and the bike was worth around $20,000-$30,000 and it sold for $45,000. Dana, who owned the company kicked in another $10,000, so in like 90 seconds flat we had raised $50,000 and I had done nothing! And I was like, “Wow, that’s amazing.” And I was seeing all these cars being sold for hundreds of thousands of dollars, and so I eventually managed to talk to Dana Mecum and said, “Would you partner with us?” And he was like, “Why you? Why should I partner with you when there are so many other charities out there and they ask me to do things all the time?” And I said, “Well do you want to make a difference with what you do with your philanthropy?” And he was like, “Yes, of course.” And I said, “Okay, then you need to pick a cause and you need to support that cause wholeheartedly. It has to be something you can get behind. And when people come to you and ask you to do things you can say, “I’ve got a cause and this is what it is.” And he went, “Oh.” And you could see him thinking, “Wow, I can see the sense in that.” And so he said, “Okay, let’s give it a go,” and that was 5 1/2 years ago and they have helped us raise over $5 million dollars during that time. So, it worked. 

I still have to pinch myself when I go to the auctions because they’re huge. 250 people travel with them everywhere they go and they have a different auction in a different city every month. And this amazing, huge, machinery organization that sells all these cars is partnering with tiny little Curing Kids Cancer, and it’s making a difference, and they love it. The staff gets behind it 100% and they get all emotional because we bring the children out from the hospitals if they’re close by to where we’re having an auction to thank the gavel and sell cars and things because the kids love it. And the staff really want to help; they really want to make a difference. And now that we’re funding things like car t cell therapy, which has a 95% success rate, they are excited; I’m excited. It’s great. 

Hannah: It’s a great partnership for both of you. 

What are all the ways that curing kids’ cancer fundraises and how y’all distribute the funds? 

Grainne: Well, Mecum is one of them. We also have a very big golf tournament that we do every year and it’s in Dallas and AT&T is our host for that. That has raised, over the last couple of years, between $300,000-$500,000 for us. So that’s a huge thing for us. 

We also have one big event in Atlanta because that’s where we used to all be together. That’s usually some type of gala. This year it’s actually cabaret, and we’re getting 10 of Atlanta’s businessmen to come in and dress as drag queens and they’re going to compete against each other. Kind of like Dancing with The Stars, but with drag queens. So that’ll be really fun and each of them is going to raise money for us. 

Then we’ve got a summer social that we do, which is actually going to be at the Atlanta Braves stadium this year. 

We also do lots of events right here in South Carolina, which is very exciting for us. We actually have a unique event coming up: a tailgate. It’s going to be at the Alabama versus South Carolina football game. Somebody owns two railroad carriages that are parked right by the stadium and so he’s letting us use them for our cocktail party. So it’s going to be a huge tailgate. So, we’re hoping that will raise a lot of money too. And we’re going to bring some of the children from the hospital. The athletic department is working with us too because September is childhood cancer awareness month. For the last six years, we have actually worked with college football teams to try in make people aware of that because everybody knows October is for breast cancer, but hardly anybody knows that September is for childhood cancer. The team usually wears our wristbands and Will Muschamp has been wearing a gold whistle for us during the game that they pick to support us. We’re not trying to raise money with that, we are just trying to make people aware of the fact that they need to support childhood cancer. 

Hannah: That’s a lot of events that y’all put on for such a small team. 

Grainne: I know, it’s incredible. They are amazing. They work very hard; they work evenings and weekends and they are wonderful. They really are. 

Hannah: What digital marketing tactics have helped y’all get to the point where y’all are today? What kind of strategies have y’all seen a lot of success with, and spreading awareness with fundraising and things of that nature? 

Grainne: Well it’s all sorts of things really. I mean our website, of course, is the main thing and we recently designed about two years ago. It was amazing the difference, just redesigning our website made. We have a new logo, which is in the shape of a heart on a little platform. But actually, if you look at it it’s a C, a K, and a C, and people love the fact that its sort of like a secret symbol. That made a huge difference, redesigning all of that. It was hard to do because you think, “Oh gosh, are we doing the right thing here?” Because people know us as something different. But it actually worked extremely well. Abigail, who’s our PR lady, is very good at particular things on Facebook, and Twitter and Instagram and we try and relate it to people who support us. We try and relate it to people who support us and we put all our events on there, we put pictures and videos of all our videos. In fact, our fire truck pull, which happened just recently, the basketball team from South Carolina came out to help and they did their own video at the event. So that went out on social media, and it went all over the place. And actually Tony Barnhart is on our advisory board for the charity; Mr. College Football. And he actually retweeted the video as well, so it got a very wide audience, so that was good. 

But we’re just very aware of trying to do things electronically because people don’t want pieces of paper, or mail-outs or anything these days. They want to see a video, they want to see pictures, they want to know stories. It’s all about your story. I do have a very unusual story. It doesn’t have a happy ending that I would have liked or that anybody would have liked. But at the same time, I think people like to know that you can get through stuff like that. And that you can make something good happen. 

Hannah: That’s wonderful. We work with a lot of nonprofits here at DWG and that’s the main thing they all say is keeping your story. No one else’s story is exactly like your nonprofit so really just keeping at the forefront at all of your marketing and PR really just helps a lot. 

Grainne: I never thought that we would have so much success and people like to see that. They like to think that you’re making a difference and that their money is making a difference. One of the most unique things that we do is that I insist on meeting all of our doctors whose work that we fun. Because I want to be able to look people in the eye and say, “I know where your money’s going. And I know it’s making a difference.” Because right now it is actually making the difference between a child surviving or not. I never thought that I’d be able to say that, but we are actually using the money to save children’s lives. And it doesn’t get any more exciting or anymore rewarding or just amazing that you can actually do that. 

Hannah: What challenges have y’all faced as an organization when it comes to marketing and PR? 

Grainne: Well just resources is a lot of our thing. There’s only 5 of us and Abigail is really the only one who has been doing PR and marketing, but we all pitch in and help. We try to get our board to pitch in although a lot of them are not necessarily that great at social media. But we’ve been educating them and I think they’re actually getting to quite enjoy the fact that they can share things and say, “This is what I’m involved with. Look at it, isn’t it great?” We put our doctor’s stories out there whenever we can and of course the children’s stories too. We’re just so blessed that we have so many amazing doctors and families that work with us. 

Hannah: I’m still so impressed with all the events that y’all put on, especially with just Abigail being in charge of marketing and PR. It’s incredible that y’all have made the most out of your team of five. 

Grainne: I didn’t really tell you about the fire truck pull, but that was the event that we just had here in Columbia. That is an amazing success story all by itself because Abigail has taken it from the fire station, where it was, and we moved it to Mainstreet and worked with the city, and instead of 1 fire truck, we have 2 now. We had almost 50 teams this year participating. Each team pulls for a child whose either in treatment, survived or in memory of a child. So literally each team is pulling for a child. The children love it and their families love it because they can cheer them on and watch them actually pull these huge fire trucks with just a piece of rope, which is amazing in itself. Everybody really gets into the spirit of it. Also, we encourage the teams to dress in their child’s favorite thing, so we actually have big firemen who have dressed up as bunny rabbits just to pull the fire truck. Or superheroes. Whatever it may be, but it is very funny. If the child is a little girl and she likes ballet they’ll dress in tutus. We had the entire equestrian team from South Carolina dressed in tutus one year. It’s a really fun event and it gets the whole community involved. 

Hannah: That’s what I love what you were explaining too and that the events get the children involved too. I mean the supporters and the actual participants in the event, they’re really rallying behind being a part of the community and the cause but the children are there too and they get to see what they are doing and how it’s actually making an impact so I think that’s really great. 

Grainne: Right. And people are amazing. If you tell them there’s a need for them to help, and give them something to do, they’ll do it. And they’ll get excited about it, which is wonderful. 

Hannah: What are your hopes for the future of curing kids’ cancer? 

Grainne: Well, I want to basically turn childhood cancer from a potential disease into a curable one. It’s as simple as that. And we’re well on our way. It’s amazing. Car t-cell therapy, which I had mentioned earlier on, is where they take the child’s own t-cells, which normally fight colds and infections in you and I. But they never have recognized cancer cells, which is why they don’t help to fight it. They take the t-cells out of the child, they genetically re-engineer them in the lab, so that they recognize the proteins that are only on the outside of cancer cells, not on healthy cells. They put the t-cells back in, so it’s like an infusion. A one-time thing. They have used this on children who are on hospice care and they’ve had a 95% success rate with it. Children whose parents have been told that there is no hope are actually surviving. It gives me goosebumps every time I think about it. And a 95% rate with a new treatment is unheard of in the medical world. It actually got FDA approval about 18 months ago and it’s the first treatment that was specifically designed for children with cancer that has ever been approved by the FDA. When you’re doing stuff like that, it’s so groundbreaking and amazing. You’re actually helping to change the way that cancer is treated. 

Hannah: That’s so amazing. 

What advice would you give to other nonprofits who may be struggling to gain awareness in their communities and really just get started? 

Grainne: I mean you just have to spend time. It’s time and effort, really. Make sure that you have a good website, make sure that you’re on social media and try to be on as many different things as possible. So not just Facebook or just Twitter, but Instagram and YouTube. Do things on YouTube. If you’ve got a board, encourage them to help you. Friends, family, get people to share things, retweet, whatever it takes. It’s just a question of time and effort and to have a story. That’s the most important thing I can tell anybody is to know what your story is. I mean mine is very particular, and it is literally a life story but I mean there are other ways to explain to people why you are doing what you’re doing. Once you can get them to believe in you, then who knows. 

Hannah: That’s great advice. 

In the next portion of the interview, I like to ask everyone some quick rapid-fire questions to get to know you better. 

My first question is are you a morning person or a night owl? 

Grainne: Oh, I’m a night owl. Definitely not a morning person. Don’t talk to me before I’ve had a cup of hot tea. 

Hannah: What is your spirit animal? 

Grainne: Now see, I had to go and look this up because I cheated. I knew you were going to ask me this. I had no idea, but apparently, it’s a tiger. 

Hannah: Do you feel like that’s accurate? 

Grainne: Probably yes. Because I’ve had to fight so hard to get the charity off the ground. And even with Cillian was sick, you have to advocate for your child. You have to fight for them. So probably yes, I would think that’s fairly accurate. 

Hannah: What are you currently reading or listening to? 

Grainne: I am reading an extremely interesting book called An Elegant Defense, which is written by a journalist and it’s all about your immune system and how amazing it is and what it does and what it does when it goes wrong, and what it does when it works right. It’s absolutely fascinating and I would definitely recommend it. 

Hannah: What is the best advice you’ve ever received? 

Grainne: Probably from my boss at the stock exchange, when he was interviewing me and I said, “I have no idea how it all works here. This is all new to me.” And he said, “That’s okay. You’re allowed to make mistakes, just never make the same mistake twice.” And I was like, “Okay, alright.” But you know what, if I make a mistake, I take note of it and I’m like, “Okay that went horribly wrong, what did I do wrong?” And then learn from it. 

Hannah: And my last question is who inspires you? 

Grainne: My son. All my children, actually. Cillian was so brave when he was going through treatment and its so horrible traditional treatment. But the other 3 went through it with him and then didn’t have him at the end of it. They have all persevered, and I love the fact that they still have their faith. Actually, Cillian’s twin had the worst time ever because his best friend, who he had been best friends with since kindergarten, was actually killed in a car accident when he was 15. So poor Garett lost his two best buddies and is still out there. I’m just very proud of them; they inspire me. 

Hannah: That’s amazing. So that’s all the questions that I have but before we go I just want you to share where people can go to learn more about Curing Kids Cancer and learn more about your cause and donate and volunteer. 

Grainne: Alright, well our website is curingkidscancer.org, and we’re on Facebook and we are on Twitter, we’re @curingcancer. And Instagram, you can just go online and look up my story. It’s really the story of the charity though, and how we do what we do and why we do what we do. 

Hannah: Well thank-you so much for being here today. It was truly an honor to have you come and talk to us. I hope you all got some value out of this conversation, I know I did. I just feel really lucky that you took the time out of your day to come chat with us at DWGTV. But with that, please just follow along with us on social media, Facebook, Twitter, LinkedIn, and Instagram to find out when we’ll be going live next, and we’ll see you then. Thanks, guys, bye. 

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