>> You know this first week, I figure the first week or two are going to be a bit choppy. >> Today the predicted high is between 97 and 100. >> Yeah. >> And you're going to be running in the heat of the day. >> Hi, welcome to Director's Cut. I am Charles Monroe-Kane. That was a clip from the documentary, FEAT. The documentary chronicles one man's coast to coast quest to run 63 marathons in 63 days, yes, I said 63, for kids battling the rare, terminal childhood disease called A-T. >> We're joined today by the documentary's director, Deborah Carr, and by cinematographer Bradley Carr. Thank you for both for joining us today. Two things about this film. First, it's about a disease called A-T, and it's about a man, Tim, who's running the 63 marathons. First, who is Tim? >> Tim Borland is an endurance runner. We met him in 2007. He had ran a handful of marathons, competed in a few triathlons. He had met a family whose daughter, Cathryn, at the time was 16, and she was diagnosed with Ataxia-telangiectasia. Tim actually trained Cathryn's father, Jim, to run the marathon in honor of Cathryn. >> So he was inspired by just that experience to run 63 marathons? >> They went down to this annual event at the Disney World Marathon. Tim walked into this room and saw hundreds of families with kids with this disease, and said I've got to do something bigger than just train one person to run in this marathon. He looked inside himself and decided to do something wild and grand. >> Wild and grand, my god, he did. Before we talk more about Tim, which we will, he's a very important person to talk about. The disease, I've never heard of it. I'm sure most people have never heard of it. What is it? >> A-T is Ataxia-telangiectasia. It's best described as a rare terminal children's disease, a neuro-degenerative disease. Both parents need to have a recessive gene. Then there's a one in four chance that your child will be born with A-T. >> Wow. >> It combines symptoms of Cystic Fibrosis, Muscular Dystrophy, cancer and immune deficiencies. Your child is born absolutely normal. Around the age of 2, when they're walking, they're a little bit more wobbly. That's generally the first sign. Some may develop telangies, which are small spider veins on the surface of the skin around the eyes. Most are in wheelchairs by the age of 10. They don't often survive too far beyond their mid-20s. >> We know of about six families here in the state of Wisconsin that have members of their family with the disease. >> Because you said rare. It's pretty rare, there's only a couple hundred cases, right? >> The organization says they know of about 500 cases worldwide, at this point. As doctors and practitioners see more and more cases, I mean, often it's a very misdiagnosed disease. >> I can imagine. >> So, you know, sometimes somebody gets diagnosed with Cerebral Palsy, and they go on and pass away, and they never got properly diagnosed. There could be many, many more. >> We're going to see a clip of Cathryn, actually, who we were speaking of, who kind of started the whole thing. Then we'll come back and talk a little bit more about the disease and about Tim. Let's roll that tape.
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>> I'm Trisha Harvey, the assistant director for this show, along with Cathryn Achilles. We welcome you here. Cathryn has been my friend for about 11 years. I've known her since before she got into this wheelchair, before they knew what she had. She has a disease called Ataxia-telangiectasia. It's a very rare disease. There's only about 500 documented cases in the United States. >> We understood there was something wrong with Cathryn right at the very beginning. Within a year she diagnosed at failure to thrive, which means we have no idea what's wrong with her, she's just not growing right. At one point in time she could play the piano. She had ballet lessons, back when she could walk. >> I want to dance ballet. >> You want to dance ballet? So it wasn't until she was 8 years old that we finally received a diagnosis. >> Even though it's a genetic disease, most families do not know that they're at risk for having a child with Ataxia-telangiectasia. >> Misdiagnosis is very common. most kids with A-T have the wrong diagnosis for first several years of life. >> The most recent estimate we have says that about half the children with A-T will die by the time they're about 22 years old. >> Wow, it seems powerful. What is your connection to A-T? There must be a reason that you spent a long time filming this. >> We met at the University of Wisconsin-Oshkosh, in the Radio, TV, Film program. While Deb was there, she was working at the Fox affiliate. She got a call from an A-T mother. >> She was looking for coverage for a motorcycle benefit ride. Of course, you ask some more questions. As the weekend assignment editor, saying, okay, what is this benefit for. She proceeded to tell me about Ataxia-telangiectasia, A-T. Two of her three children have A-T. I'd never heard of it. We quickly became friends, and I learned more about her and her family. At UW-Oshkosh then, our National Broadcasting Society, we took on the nonprofit A-T Children's Project as a philanthropic organization that we were going to serve. So that was in the late '90s, and ever since then, we've been involved with the A-T Children's Project, and this growing community of families that we know across the U.S. who have children diagnosed with A-T. >> We were equally inspired by this family. I started a telethon my senior year, which has become an annual event at the university in November. From there, you know, it just became very close to our heart. >> There's a moment in your lives, right? There's a moment in your lives. You get a phone call, you're reading a newsletter, you're connected to this organization, that Tim, some person you've never heard of, from what, St. Louis, right? This guy is going to run what seems pretty audacious, 63 marathons over 63 days for a cause that you're very aware of. There's a moment you find out this, and the two of you are sitting around the breakfast table saying, hey, let's take off X amount of time from our lives and let's make a film about that guy. >> That's how it went! >> Is that what happened? >> Pretty much, we're scratching our heads going, wait a second, this sounds like the makings of a pretty good story. >> Sure. >> And if we can tell the story of Tim, you know, struggling to get through 63 marathons at the same time show the story of these families who are, you know, struggling through and facing having a family member with A-T, what an amazing juxtaposed story to tell as a documentary. >> So, you just decided to do it, just like out of the blue? >> Yes and no. This is ten years after we met the first family in college, and we're now living and working in Los Angeles in television production. I've done my fair share of documentaries for the History Channel, and Brad's done a lot of reality television. So, we're not just-- We're seasoned film makers, to some degree. We got the newsletter from the A-T Children's Project announcing in January, 2007, that five or six months from now, in September, Tim Borland was going to start this endeavor. I think we looked at each other and said, who is this guy? >> Right. >> Never heard of him, and you know, can he do this. So it was a leap. >> You don't want to make the film with him not finishing. >> No, and he wasn't an established runner. He's not an Olympic triathlete. He's not an Olympic marathoner. He had competed in a handful of events. It was really a risk on our part to do it. >> You have run marathons, right, you guys have run? >> Just one. >> At least you've done it. >> Just once. We know what it takes just to do one. So let alone 63. >> This dude needs to be ready for 63. >> I mean, come on. >> He had done a few ultra events, but he had never, on his resume, done over ten consecutive marathons in ten days. >> So why did you do it? >> I think it's the faith. You know, we were close to the story, as much as Tim was. We were equally inspired. We said, okay, if Tim can put himself out there and do this, why can't we as filmmakers? Why can't we try to go along for the ride and see what happens. >> What's most powerful is that this came to be known as the A-T Cure Tour. It was never about one man running, what Tim did. He made a very cognizant decision that is really impactful. You see it in the film. It's not just one guy in the street running. He's pushing a mobility jogging stroller. Every day, we ran through the communities where these A-T families lived. So as you can imagine, the disease being so rare, these families, they feel very alone. This was an event that offered them an opportunity, maybe for the first time ever, to meet another family who has a child with A-T, and get to know what they're going through. So every day, it was a chance for them to connect, see Tim's progress around the U.S. We did daily blogs every day that are on YouTube, that are still up there today. Families from California met families in Texas and Florida and Rhode Island. It was a once-in-a-lifetime opportunity for this small community of people to feel like they're not alone. He managed to do that, and he managed to put the focus on the kids by pushing that mobility jogging stroller, and having the kids in the stroller, not for all 26.2 miles, but on some days, maybe there'd be three or four kids in one community that are impacted, and he would take them all for, you know, a mile or two and switch them out. It was always about them. It was never about him. >> I want to show a clip of Tim. This is one I think is an amazing clip, because it shows how many people it takes, and how much energy he needs to be able to do such a Herculean task. This is another clip of Tim. Let's roll the tape. >> After I committed to the tour I really realized that I couldn't do this on my own. Mike Durant is a good buddy of mine from years back. He's fun to be around. He's entertaining, super easy-going, really relaxed. He's going to be a huge asset to us on the road. >> My role on the tour is going to be the driver, and then besides that I'm going to wear a lot of hats. I'm hoping to be his voice of reason. Also his mother, always telling him to eat and drink. Getting him into bed on time, keeping everything flowing real well. >> My wife is supportive. You know the idea of traveling the country with two young kids in an RV can be overwhelming at times. >> It took a while. I had a list that I asked him. You know, he needed to figure out, as far as making sure that our family was taken care of, and then, I said as long as those things are taken care of, then I have complete faith in you and you should go for it. >> I think when this first Thing came up we all went, yeah, right. Yeah, let him just entertain this fantasy and he'll get over it. You know, Tim's a dreamer, and he's always got these wild, crazy ideas going around in his head, and we just thought maybe this was another one of those. And I think Michelle kind of thought the same thing. >> Our wonderful new home on wheels for the next two and a half months is a giant RV. >> Everybody grab something. >> Okay, stop driving like a crazy guy. >> Oh, here we go. Hold on. >> I moved into it kind of like a house and realized that when you brake, things fly off the counter, or out of drawers, or the compartments are supposed to lock but they don't always. >> Hey. Colton, no. That's not funny. >> Once he told me he wanted to bring his family...
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My reaction was a little bit mixed.
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>> My reaction was a little bit mixed. I was just saying, I don't think I'd bring my kids, oh, my god. I can see why he did it. You watch this film, especially in the beginning, as his body got used to running marathon after marathon, he was a mess. I mean, he was a pretty stoic dude, but you could tell he must've had really bad diarrhea, he was throwing up, his muscles were obviously killing him, the way you could see. At one point, he was running with the stroller with Pepto-Bismol next to Pedialyte in the stroller. >> Oh, yeah. >> What was it like filming a man for weeks before his body got used to it, who was obviously in excruciating pain? >> Well, I think as you see the film, you'll find that very early on in the race, he crashed hard. >> Day three. >> Yeah, it was day three. I think his body was being put into shock and now having to eat a lot more and process so much more, you know, food, that he wasn't properly hydrating, and then fueling his body. I think over the course of the journey, it became easier and easier. We kept saying, okay, when's he going to crash even harder. And he, you know, went in and out of GI issues, and other things, but for the most part, he became stronger the more he went out, which is amazing. >> I'm curious for both of you, in the early days. Now, you're the guy with the camera? >> Yep. >> So you, I assume you're not running in front of him backwards with the camera. You're like in a car or bicycle, or something, right? >> It varied by the day, and it varied by the route. Going into it, we knew to some degree what the route was going to be, but every day was different. Sometimes it was a pre-established marathon route, that if the city had one, we'd just run that route on city streets. Other times, we were on trails, bike trails. Sometimes it was a combination of the two. For those first two weeks, while the runs were in California, we experiment with what we had. We had a steadicam rig that we were shooting out the back of our Honda Pilot. >> Yeah. That was our experimental stage. Then once we realized, okay, we were in this for the long haul, you know, that he is going to go the distance and we're going to join him. We just kind of like-- >> Got lean, really lean. >> Lean and mean, and it became Deb and Brad in the SUV, traveling and chasing this guy as he crossed the country. >> That's fun. >> It was fun. >> You should've had a crew following you. >> That was the real story, yeah. That really was a story in itself. >> You know, for me what's interesting as I watch all this, and I'm so intrigued by it. I've never run a marathon, but I can't believe what he did. He, especially in the beginning, like I said, was having such a hard time. He was so, you could tell when he was running, he was half limping, he was really struggling. He started talking about the kids and how much they inspired him. When you first hear that, of course your knee-jerk reaction is this is contrived, whatever, he's talking about being inspired by this. But then you saw him in that beginning, like he really was inspired by these kids. It's almost like I find it hard to believe, but I saw his eyes doing that. This guy, I don't know, he seems like a different kind of person. >> He is. Tim Borland is one of the most humble people. He is the humblest person I've ever met in my life. And before we committed to doing the documentary, we of course wanted to meet him to see if he was for real. It was in February of 2006 that we first met him. >> I believe so, yeah. >> That was our impression upon meeting him. I think after getting to know Tim and his family, it's not just Tim. It was equally his wife Michelle, who had this undying faith in his ability to do this, and his friend Mike, who you saw in the clip. I think collectively, they are just people who want nothing more than to help the greater good. He truly looked inside of himself and said I have this gift, what can I do with it. What you see in the film, that's who Tim is. >> It's interesting in such a cynical world, you don't know if you can believe it when you see it. It's like, is this real? >> Right. >> Of course, if Tim was sitting here, he's not, he'd be like, why in the heck are you talking about me, let's talk about the kids. So I want to show another clip that I think really helps people understand in a very specific, personal way what it's like for the parents and the kids who have A-T. I'm going to show that clip and come back and talk a little bit more. Let's roll that clip. >> Today we came into the hospital with Max and Jake with the intention of having their IVIG taken subcutaneously which would be under the skin rather than intravenously. Due to insurance or some decision by the doctor, they decided to do it back to the IV without letting us know. Max's is going okay. >> Jake has always been kind of my problem child, in a good way. It's just that with his age, his IV access is very difficult. He likes to move around, so it make everybody's life a little bit easier when we put him in a little papoose so he doesn't wiggle quite as much.
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>> I know. >> It was like, when you watch on TV and you see some people being tortured but you're doing it to your own kid, because I was the one holding him down.
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>> Sh... >> For me, in order to get by today, I have to hold on to my hope that they are going to find something, at least to slow the progression.
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>> They tried three times. Now they're bringing somebody up from down by surgery, an anesthesiologist to come up and try, hey Jakers. Good boy. You're a tough little puppy. >> That is very sad. I have to say, I have little children, and one of the worst memories of having kids isn't the flu at night, or whatever. It's the holding the kid down, the 18-month-old down while the nurse gives the booster shot in the thigh. The kid screams and gives you that look of like why are you holding me, I hate you, you know, and you feel guilty and terrible, and you give them candy the rest of the day, and you have this horrible day. I can imagine what these people go through, and any parent watching this can imagine it. As filmmakers though, how do you do that? I think you did that tastefully, but still, how do you do that without being pedantic, manipulative, and fair to the viewers? >> We talked about it before going into the hospital. Just to give you some context, this was an IGIV treatment, which are immunoglobulins that are administered through an IV. A lot of these A-T children get these treatments because their immune deficiencies are depressed. >> Right. >> But this is shot in 2005. Since then, that was the last IVIG treatment that the boys, Max and Jake, had in the hospital. They've since been doing it at home in a less invasive procedure that the dad Mark can actually administer. >> That's good. >> But to get to your question, I mean, we did talk about it before we went in, how we want to shoot this. There are certain, you know, we didn't need to see the needles going into Jake. We know what's happening. But we knew for Laura, Max and Jake's mom, it's always been difficult for her to accompany the boys. That was something the father always did, Mark. So, when she's just standing in the waiting room, that's what she does. I think the image of her just standing there, you know, holding her arms, says enough. >> I think so. >> We didn't need to shoot in the room. We understand what's happening. And you can see on their faces the pain that they go through and it's relatable. >> You have a reality TV background. I'm not going to disparage reality TV. I think that would be too easy to do, and it's not worth it. But you've probably seen a lot of things that might be the opposite of the decision that the two of you made. How is this different from the daily life of a Fear Factor, or other shows that are reality TV, who I think would show much more? It would be much more in the face of the pain. Why, for this personal project, would you choose to do it in a more tasteful way? >> Well, I think those are completely different projects. Obviously, for TV, you have a set schedule, and you know, reality is sometimes a little less reality than you think it is. This, we very much wanted to be the fly on the wall, cinma vrit style, and let things happen. We stood back and just wanted to see what would unfold in a day, just let tape roll and see what would happen. I think that was probably the biggest thing. We never asked for a second take. We never asked for, oh, we missed that shot Tim, can we re-do this, you know, can you re-run that route, because we missed that beautiful shot? For us, you know, it was always like trying to keep, you know, keep moving ahead of him, so we could keep with that story. >> But when it came to the families, it was more about the fly on the wall intimacy. There were two different styles. I mean, Tim, we were chasing constantly. We'd set up shots. But with the families, we were in their homes, which is the most intimate setting to be in, and we didn't have a lot of lead time with all of them. So we were very aware of how brave they were to share their story and welcome the two of us into their homes. We wanted to be respectful of that. At the end of the day, it was just about really trying to understand what their daily lives were like, and just using the camera as an observation of that. >> We were discovering just at the same time as the viewer is. >> And I assume over time, people got to know each other and email about you guys, and you were trusted with Tim. We're going to show another clip. In this one, we'll go back to Tim again. It's actually one of my favorite clips from the film. We're going to roll this clip and come back. Let's roll that tape. >> I've got to be careful. I use a different shoe every day. So we've got our system now. FIFO, first in, first out. We date it, mark it, put it away and pull out the next day's shoe. This is what I'll run in tomorrow. Looks a little different? No, it's the same. >> His weight over, you know, over the course the first 28-some days has been slowly decreasing. You can see it in his face. It's starting to look a little bit malnourished. He looks really thin. You can start to see his ribs. It looks pretty bad. I'm really concerned about the next 30 days and continuing at the same rate it's going. Your mom is very concerned about your weight. >> Oh, really. >> At this point we haven't really tracked your weight, but everyone's noticed a subtle weight loss so we got a new scale for you. >> Oh, my gosh. >> So at least-- >> This is like a plaque. >> We're going to be weighing you probably every other day. to make sure. I mean five, ten pounds over the course of the tour is going to be okay, but we're not-- anything more than that is probably unhealthy. >> I just had a scone. Is that good? >> Do you know what your weight was prior to starting? >> I think it was 183 or something that Stacy weighed me in at. >> Okay. >> We got 188 twice now. Twice in a row. >> Okay, try it one more time. >> I know I'm gaining muscle and that's heavy. It's a lot heavier than fat. Did you get my toe? >> We'll start you at 188 because we don't know how this scale varies from your first one. >> Okay, thanks buddy. >> 188. He's got a lot of things on his plate he's doing, as far as giving interviews and talking to people and trying to run and trying to keep up with families. He's not putting the time and attention of his own body, so I'm there to help make sure that the hand that does not have his cell phone has got a sandwich in it. Whenever he thinks he's hungry, he can eat. >> My hand has a cell phone and a sandwich, too, but it's not the same thing. I have a lot of shoes, too. I'm curious here. The whole reason that Tim did this, and probably a lot of the reason you made this film was to inspire families and other people to raise money, raise awareness. How did it do on those fronts, his race and your film? >> Overall, quite well. By the end of the Cure Tour in New York, you know, Tim was on ABC World News. You know, for a brief period of time, Ataxia-telangiectasia or A-T was something that people may have said, oh, I heard about that, or I think I heard about that guy. The objective was met to get people talking about it, and some money was raised for the A-T Children's Project. But the fight goes on. >> And we're happy that this documentary has been able to, five years later, still tell the story of the Tour and what he did, and what these families are facing, still today. That's why we're so excited to be here today, and you know, to continue to tell the story. >> It's interesting. We talk about cures. Are they closer to a cure for this? I know this is a very specific disease, right? Johns Hopkins is studying this specifically, right? >> They've done a lot of research to help mitigate the symptoms. Since we first met kids in the late '90s, their life expectancy has grown. Right now, the A-T Children's Project is focusing their efforts on funding projects that look at decreasing the brain cell death in these children. So, they are making great strides, but like all research, it takes time and it takes money. But there is evidence that this money is going toward a good cause, and it is being put to very good use. >> Well, thank you very much. I was very inspired by watching it. Not only maybe to run, but also to do more with your life. It's not just about running. >> Yeah. >> Thank you very much. And thank you all very much for joining us today and watching Director's Cut. For more information on
FEAT
63 Marathons in 63 Days,
please go to our website at
wpt.org and click on Director's Cut. I'm your host, Charles Monroe-Kane. For everyone here, check the gate. >> How do you think Tim will react to the end of this? >> Very tired. >> Mm-hmm, that's what I was guessing too. But it would be really cool if he makes it, correct? >> Correct.
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