Video Transcript

00:13 Doug Ulman: Now, many people talk about social media and they come up to us, myself and my colleagues and they say, "How much money are you raising through social media?" "Are you doing your fund raising campaigns online?" And the answer is yes, but that's not the real value in these tools. The real value for people with cancer is that it connects people to one another. When I was diagnosed, all I wanna do is talk to somebody else who'd had the disease. Somebody else who was 19, somebody else who was in college, somebody else who understood what a burden this disease could be. And these tools allow that to be possible. So while fund raising is great and is growing and these tools have allowed us to do that, that is not our core mission or our core purpose. Our goal is not to become the biggest organization to raise the most money, it's to touch the most lives.

01:01 Ulman: And what we found is that people wanna share their story. People who have been diagnosed with cancer they want a platform to do that and they have those platforms available to them today. So let me talk about Brian Rose. As I said it's all about the individual, it's all about people. Brian Rose is diagnosed with stage IV melanoma at the age of 32. He's a baseball coach. Coaches for a team called... A minor league team called the... Let me get this right, the Wichita Wingnuts. Anybody from Wichita here? I typically say Wingbats, but I think it's Wingnuts. Brian is this amazing guy. The most positive attitude you'll ever see. He lives in the off-season in Austin, Texas where we're based. Brian came into our navigation center in 2010 and said "Hey, I've just been diagnosed. I coach minor league baseball, I don't have insurance. I'm worried about my fertility, I don't have kids yet. I wanna have kids, I wanna have a family. I have no idea what to do. And, oh by the way, my prognosis is terrible."

02:11 Ulman: Our navigators were able to enroll him in an insurance plan, get him a reduced rate on sperm banking so that he can preserve his fertility and access clinical trials that may help save his life. He spent a lot of time with Ashley who you see photographed here as a social worker in our navigation center, and she helped him walked through this process. One of the things that came out of this process is that Brian wanted to share his story. He was so grateful for the experience and for the fact that he could find a clinical trial and he could find insurance and he could preserve his fertility and all these great things that he wanted to share his story. And so, he started a blog. And the website is up on the screens howsbrian.com and he epitomizes this idea of fighting cancer. He epitomizes the Livestrong brand. He epitomizes everything about it. And he's starting to get these following of people.

03:04 Ulman: So a year and a half into his treatment, from one clinical trial to the next, flying to Los Angeles for a new type of therapy. Unfortunately, he was told that the therapy he was on, a new cutting edge drug that's made by Genentech, wasn't working. And they said there's nothing we can do. Came back to Austin, married his long-time girlfriend, Lupe, who had a real struggle on her hands. How to deal with this relationship, how to deal with being involved for a long period of time with somebody who ultimately might not survive? Came back to Austin, sort of was wondering what to do and, lo and behold, a new clinical trial opened up at MD Anderson in Houston. His doctors were excited they said, "You know what we think? Because you're young and you're healthy and you're fit we think your response rate is gonna be really high. Maybe 60-70%."

04:00 Ulman: They called him back a week later. He got so excited and they said, "Unfortunately, your insurance isn't gonna cover this clinical trial." So Brian called back to the foundation and he said, "What should I do? They're telling me I owe $70,000 to be a part of something that could potentially save my life. What do I do?" So we developed a strategy. We got together and we said, "Listen, we need to put this out there to the public." We said, "Brian, you need to write about this on your blog. You need to do a video that talks about the fact that you have the potential to have your life saved by this new therapy, but you don't have the resources to make it a reality." So he did that. We had a video crew come shoot him, put up this video, and within a number of hours he started raising thousands of dollars. Thousands of dollars from the public.

04:48 Ulman: The next day, a very generous individual called and said, "I saw the video," and said, "I wanna take care of the $70,000." I mean, we were blown away. The generosity and the human spirit is such a powerful thing. So we arranged the teleconference that night. We had Brian on the phone with this incredibly generous benefactor and he said, "Brian, you're all set. Just tell me where to send the check, I'll make it out tomorrow, start your therapy and good luck." Right around the same time, literally the next morning, one of our navigators in our navigation center gets a call from the insurance company and said, "We saw this stuff online, we see the impact and the reach of this sort of social campaign, we're gonna cover his treatment." Think about that. Policies, procedures, a company that has rules and regulations, even though I might not agree with those rules and regulations, changes their mind based on this groundswell of support from the general public saying, "Give this guy a chance. Give this 34-year-old newly married, optimistic young adult a chance at life."

05:59 Ulman: Brian started that treatment about three weeks ago, and although he's extremely sick and beat down just from the therapy, he's responding really well. And so we all got together and we said, "Well okay, how do we take this to the next step? We used social platforms and tools to tell his story, which ultimately helped provide him this opportunity to live. Now we need to spread that to more people." And so we worked with Brian a few weeks ago to create this short film.

06:27 Brian Rose: I was one of those kids that played baseball all year round. Played through high school and then got into coaching. Part of doing that is giving up things like health insurance, and 401k's, and living in hotels, and traveling, and following my passion. I had a mole, a freckle, kind of a discolored spot on the top of my scalp and had a biopsy done, and I got a phone call from the dermatologist saying that it was malignant melanoma, and the ball began rolling from there. PET scan revealed that it is indeed in the lungs, it's in the middle of my chest, it's in my back. As he called it, "It's a very mean melanoma." As it just presented all these new hurdles. I knew nothing about these treatments. I knew nothing about these clinical trials. I wasn't sure how long I was gonna be around.

07:16 Rose: The first time that I heard clinical trial at the doctor's office, I went straight home and started looking for some information about some of these trials. It is absolutely crucial to have access to information and that's what I was able to find with Livestrong's navigation services. And my doctor set me up with a trial in Los Angeles. It's just a pill, that's all it is, I take six pills a day. The clinical trials that I've been a part of, I'm just gonna say flat out, they are the reason that I'm still here. It's my responsibility now to play my part in a development of these new drugs and maybe 15 years from now, maybe they won't have to worry about melanoma anymore. There's good days and there's bad days, but I choose to focus on the good days. I'm still coaching baseball. I mean, I'm still doing what I love to do as opposed to maybe what would be a more sensible traditional concept of being an adult.

08:17 Ulman: So not only can you see the fact that he's a phenomenal individual, but what I'm hoping to convey is that social media and the strategy we're employing is sort of beginning to end. In other words, it's not a one way tool of communication. It has transformed our business in ways that I never thought possible. In the non-profit space you used to do newsletters, and mailings, and all these things, and those things are obviously old and antiquated. But what Brian's story shows us is that you can serve an individual by focusing on your mission, by connecting people using these tools, and then you can give people a platform whether they be those who you serve, your customers, or your employees. A way to communicate, a way to disseminate their story, a way to drive further engagement from others in the future. Undoubtedly, our navigation center is now getting calls from all over the country as a result of Brian's platform, and him sharing his story.

09:19 Ulman: And so is this cycle. And if we as an organization focus on our mission, and use these tools for the benefit of those with cancer, we will never, in my humble opinion, ever have to worry about fundraising. The goal is never to have to ask somebody for a dollar anymore. The goal is for people to understand the direct service, see the need, hear powerful stories like Brian's and say, "I wanna be a part of that and I wanna help others who unfortunately will be diagnosed in the future." Every single person has a story. Everybody in this room as you saw earlier has a story, and for us, and I was a non-believer, these tools have allowed us to communicate in an authentic, transparent, real-time way with people who believe in this movement.

10:07 Ulman: So I'm gonna close by just asking you for one favor, and that is, on your chairs you not only have a Livestrong wrist band but you also have a brochure for our navigation services that we provide over the phone, over the internet, in person. And my favor is this, the most frustrating thing that I hear everyday when I'm traveling and getting to meet awesome people like those of you in this room is, "Man, I wish I would've known about these resources and services when I was diagnosed. I wish I would've known when my dad was diagnosed, that you existed and these free services and support were available." So when you leave here, and it will happen, within the next week or two weeks or month, someone you know is going to be diagnosed. It's just the reality of the numbers. If you do nothing else, please, please just pass along our information. Have them call us. We wanna serve more and more people, and you can help us reach those individuals at the right time when they, just like I did, feel so naive, and so overwhelmed, and so scared.

11:24 Ulman: And so, I would just humbly ask that you share that information with somebody that comes into contact with you in the coming weeks and months. And finally, and then I'll take a few questions, finally I'll just close with this, as I mentioned, I had the privilege and honor of growing up in Columbia, Maryland. For those of you who are familiar with it, you know it was the first planned city in the country. Started from scratch by a developer named Jim Rouse, built on farm land right between Baltimore and Washington, and built on the ideals of inclusion, diversity, service. And so when I was diagnosed it was a natural to say, "Hey, I want to start a non-profit, I wanna serve others, I wanna help others in need." But the other thing I learned as a child, that I'll never forget, is the simple idea of the difference between a community and a crowd.

12:15 Ulman: Something my parents taught my brother and I, and that is that in a crowd people push, and they shove, and they elbow, and they fight, and they try to get one step ahead of the person next to them. And in a community, people look around, they might smile, they might nod, they might shake somebody's hand, they might give a hug, they might share their story because they know that a community does not improve or does not move forward unless everyone moves forward together. This yellow wristband created a global community of people who nodded, who shared their story, who joined. And social media and the strategy that you employ, if done strategically, can create a massive, massive community among various people, customers, employees that will serve your mission, and your organization, and your company very very well. Thank you very much for the opportunity to be here.