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The Current Transcript for April 26, 2016

Host: Anna Maria Tremonti

STORIES FROM THIS EPISODE

Listen to the full episode

Prologue

[Music: Theme]

SOUNDCLIP

I’m Tyler Richards from Halifax, Nova Scotia. Whether shooting the fall, crashing the boards, or hitting the books, just work hard and do your best.

ANNA MARIA TREMONTI: It was just about a decade ago that Tyler Richards made that inspirational video - a young Black man who grew up in North End Halifax and became a basketball star at St. FX University. Last week, he was shot dead, one of three young Black men to be murdered in the Halifax area in a span of six days prompting hundreds to take to the streets last weekend. The last few years have seen metropolitan Halifax take the dubious honour of having one of the highest rates of firearm-related violence in the country. In a moment, we're asking about the anger and calls to end the violence in Canada's oldest Black community. Also today, a Blueprint for crime.

SOUNDCLIP

When I was a burglar, I picked every lock, turned off every alarm, found every hiding place.

AMT: Every city that boasts beautiful buildings and breath-taking skyscapes is also a tease for burglars who love a puzzle. Where we see soaring architecture, they see nefarious opportunity. From fire escape plans to inter-connected sewer systems, they will find a way in to even the most seemingly secure of places. We've got a burglar's guide to the city in half an hour. And he's 51with Alzheimer's caused by a genetic mutation, with a 50-50 chance of showing up in his children.

SOUNDCLIP

It’s hard. I don’t cry in front of them, but it’s hard. Because they’re good kids.

AMT: And now family members - a sibling, two children - have an option to be tested for the same gene raising questions that cannot yet be answered. In an hour, we look at Autosomal-Dominant Alzheimer's Disease and the efforts to treat it. I’m Anna Maria Tremonti. This is The Current.

[Music: theme]

3 Halifax shootings in 6 days prompt community to stand up against violence

Guests: Quentrel Provo, Rhonda Britton

SOUNDCLIP

[crowd chanting]

ANNA MARIA TREMONTI: Well, hundreds are on the march in Halifax Sunday where the peace has been shattered after three shooting deaths in the city in the span of a week. All of the victims were black men in their 20s and it has left Halifax home to Canada’s oldest Black community, a city on edge.

SOUNDCLIP

VOICE 1: We cannot have a province, a community when we are looking at each other and smiling at each other during the day and disrespecting each other at night. Let’s have it stop. Thank you.

[crowd applause]

VOICE 2: For me, it’s very personal. I knew one of the guys really well. So, for me, it’s just devastating, just mourning the loss. There's a lot of different issues that need to be addressed. But it starts with everybody understand it's not a one-community issue. It's a Halifax issue. It's a Nova Scotia issue. It's an issue that everybody needs to own and look to themselves of why it's happening. So not just certain parts, which I think is the narrative right now. Everybody need to look at themselves. There’s not a lot of opportunities out here for people, definitely Black people, and young people. Everybody's own this issue.

AMT: Well, some of the voices of marchers on Sunday in Halifax. Our next guests are immersed in the issues they raise. Quentrel Provo is the founder of the non-profit organization Stop the Violence. It organized the march, that you heard, on Sunday. He knew all the three victims. He's in our Halifax studio. Rhonda Britton is the pastor at the Cornwallis Street Baptist Church in Halifax, which is an historic Black community church. Today, she joins us from our studio. Good morning to you both.

QUENTREL PROVO: Good morning.

RHONDA BRITTON: Good morning.

AMT: Quentrel Provo, I want to begin with you. You knew the three men who were killed.

QUENTREL PROVO: Yes, I did.

AMT: So, what's the past week been like for you getting news of their deaths?

QUENTREL PROVO: It's been very draining and an emotional roller coaster ride. But, you know, I figured that I’d do something to basically help the families have some sort of hope to look forward to.

AMT: So tell me a little bit about them.

QUENTREL PROVO: Tyler was the one I knew the most. He picked me up a couple weeks ago and drove me up the street. That was just the type of person he was, a great guy, always did stuff for the kids, and was well loved in the in the community. Naricho, I watched him grow up. He used to live behind my grandmother’s. So I saw him grow up as well.

AMT: That’s Naricho Clayton.

QUENTREL PROVO: Yeah. And he was also a good young man, you know, funny, a little joker. And Daverico was quiet. He started playing basketball with my brother. And, yeah, quite young guy, but he had some laughs as well. Talking with my brother last night and just about growing up playing basketball with him. So they were all good young men, but sometimes you make choices and stuff and things happen. But my memory is of them as good young men.

AMT: Tyler Richards, who we heard off the top there, had made an inspirational video about a decade ago. He was a basketball star at St. FX. He started playing basketball professionally. And then he got involved with drugs and guns?

QUENTREL PROVO: I'm not sure on everything. I just saw the stuff that they had in the paper. But my personal note of knowing him, because my sister is best friends with his daughter. So Tyler was around my baby sister a lot, so the memories I have of him was just a good young man and things like that. So, I don't know what he was in or what was said, but some people made choices in life and you live with them, right.

AMT: Rhonda Britton, what's your response to these killings?

RHONDA BRITTON: Well, like most of the community, I'm kind of still shocked and stunned about it. I feel very sad and I say, just using those words, they aren't adequate to express the deep sorrow that many of us feel in these losses. There is also a sense of determination to try to do something to avert this from happening in the future. I was speaking with someone yesterday and I said, this is really a state of emergency in our communities and we need to see it as such. And I believe that's why many people came out to the march, to mobilize as community, to make a show as community, standing together. And as someone said in one of the videos we have to look at this as a problem for our city and our province and our nation, not just a problem in the Black community, not just a certain segment of people. Because Black lives do matter and we need to be concerned when our young people feel so despairing and hopeless that they don't have good alternatives in life. So I think we should all be concerned about that.

AMT: Quentel, you also called this on your Facebook posting a state of emergency. What do you mean by that?

QUENTREL PROVO: Basically, we lost three young men under 30 in six days. That's heartbreaking. And the situation has people fearing to go outside, to go certain places because of what happened. And even though they said these weren't random shootings and stuff in the paper, people still are in fear. People fear to bring kids into the world. So, yes, we are in a state of emergency because we're losing our young men. They are supposed to be the future and we're losing them at a rapid rate. We're only four months in here in Nova Scotia and we've got seven deaths.

AMT: Well, you have also said that people need to tell the police what they know. What's happening?

QUENTREL PROVO: Yeah, because a lot of people say that, oh, the police aren't doing their job. They've got to do their job better. Yes, but we also got to work together and speak up, because some of us know what's happening, some of us know who's doing the shooting, some of us know this. That could lead to justice and potentially save another life. But we wait until it's too late to speak up. And, so, I'm urging people that know things to start to speak up. That's going to help the police do their job. So, yeah, the code of silence has to stop.

AMT: Rhonda Britton, one of the deaths took place in Uniacke Square, which is public housing, it's largely Black community, you’re a pastor of the church around the corner. Can you describe that area for us?

RHONDA BRITTON: Well, surprisingly, Uniacke Square, at least the housing complex, is not predominantly Black anymore. But, yeah, it is historically a predominantly Black area, where the major portion of Black people in Halifax live, around the area, not it necessarily in that housing complex. Our church has just celebrated 184 years, so we have been serving the community for that length of time and it's a pretty close knit community. Most people know each other and, as Quentrel has just said, because it is a closed community sometimes people know things that can be helpful in addressing the problems that we're facing. And so we just want to urge people to come forward with whatever information they have. Sometimes they don't realize they have pertinent information, so we encourage people to talk and let the authorities decide what is pertinent and what is not. We have to get past this mentality of snitching or ratting people out. It is a strength that we need to be able to come forward and to say we want to address what is happening around us. So, I stand with Quentrel in urging people to speak out. As a spiritual person, I believe that evil really flourishes in darkness and silence. This covering up allows it to continue to happen. We see it in cases of people who are assaulted, in cases of people who are molested. When they keep silent it bears down on them and it and it really robs their souls and their spirits. And so we want to encourage our community to thrive again, to uncover whatever needs to be uncovered so that the light can shine. And we can have a good future.

AMT: To be clear, you're not blaming the police for these things that you're talking about. This is violence that you want the police to help you get to the root of this.

RHONDA BRITTON: Oh, yes. Yes. Absolutely.

AMT: Can you talk to me a little bit about how Nova Scotia's history of race relations plays into what we're seeing?

RHONDA BRITTON: Well, certainly, because that has a major part to play in it. Because of the history of racial bias in in the province, many people have been kind of interrupted in their growth potential. Because our youth are not getting the kind of education that they need, facing barriers in the education system, then they end up dropping out of school. And those kinds of things happen because teachers don't understand different cultural context, curriculum does not reflect everyone's experience, and our children are often frustrated in school because they don't understand some of the references that are being made on or they learn in a different style or are accustomed to a different way of teaching and are not able to function in a traditional setting. So that adds to a large population of undereducated people, sometimes mis-education happens in that they are not taught basic life skills. And so they don't know how to cope with conflict. They don't know how to resolve conflict. They don't know how to do some things that we just take for granted every day. We had a talk with one of the CeaseFire members that had a young person on the street that was excited about finally being able to get a government ID because they didn't know how to navigate the system to do that.

AMT: And what is CeaseFire, I'm sorry?

RHONDA BRITTON: CeaseFire is the initiative that I co-chair in community that interrupts violence on the street and mentors young people who might be caught up in a lifestyle of violence or exposed to that kind of lifestyle.

AMT: Okay. Quentrel, you're about 29, are you?

QUENTREL PROVO: I am 29.

AMT: So, the kind of thing that Rhonda is describing, you grew up with that as well then?

QUENTREL PROVO: Yeah, I grew up in North Preston and East Preston.

AMT: And what are those communities like?

QUENTREL PROVO: To be honest, I love those communities, growing up there. If I could go back to my childhood and do it all over again, I would. But, yeah, we grew up as a closed community. Basically, you could go to anyone's house and get supper. Listen, I grew up in a strict household. I’ve been raised in a church. So, if you got in trouble at your aunt’s house, you got disciplined there and then you had to walk all the way home - it was a long walk home - and you got disciplined again.

AMT: For those of us who aren’t in Halifax, North and East Preston are predominantly Black communities, am I correct?

QUENTREL PROVO: Yes, they are.

AMT: And how are they seen from outside your community?

QUENTREL PROVO: There's a stigma. Emerging Lens Festival had a festival last week and they showed a documentary which I starred in called North Preston - A Look Past Stigma. There's a stigma about being in the Black community, that some people think that if you go to North Preston, you might just shot or hurt and stuff like that. And it's sad because these are people that live here in Halifax that never ever went to North Preston.

RHONDA BRITTON: And, Quentrel, wouldn’t you agree that it is those very attitudes that stem from this historical racial bias—

QUENTREL PROVO: Exactly, yeah.

RHONDA BRITTON: --that automatically you think that this is some kind of a bad area or this is not a place to go and it carries that stigma just because there are Black people there.

AMT: So, what's the relationship like between police and the community?

QUENTREL PROVO: It's a kind of relationship-- There's a lot of-- It's like a magnet, like you're trying to put two magnets together, the same end and they repel, basically, because they don't see the police visible until something happens. You know what I mean? Most times, even though we have an office in the community, sometimes the kids just grew up with that mentality, seeing stuff on TV, you know, I don't like to see the police. You know what I mean? If we create relationships, basically, outside of just doing your job, like come play basketball with the kids in your street clothes and build the relationship, because that's the hardest thing to do. You have to build a relationship of trust with these youth and these people for them to trust you.

AMT: You've made the point, Quentrel, that it's not solely the responsibility of police or even government, that it's the responsibility of the community. What are you seeing that that worries you so much within the community?

QUENTREL PROVO: It’s just that we have to all work together. My thing is with this whole situation is it’s not the police’s fault, it's not the government's fault. It's everyone's fault. And it’s hard when you see people not owning it and we're putting the blame on others and making excuses when we all have a part in this. We’re losing the young men left and right and we're saying, well, yes, we have a lack of opportunities and stuff in the community. Yes, we understand that. But what are we doing to basically get that. But we can't act like, you know, leave this to the police. Let them figure it out. Leave it to the government. Let them figure it out. We have to figure it out all together and work together.

AMT: Rhonda Britton, you’re originally from the US. If you watch the Black Lives Matter movement in the US also come to Canada, specifically related to police relationships with Black communities, where do you see similarities? Where do you see differences in the community we're talking about today?

RHONDA BRITTON: I think it's very similar in terms of this historical divide that has been between law enforcement and the Black community, but what I like about Halifax-- I wasn't here for, I think, barely a week, maybe two weeks, that the former police chief reached out to me to say, welcome to the community. May I come over and meet with you. Let’s talk about things that we can do together to make the relationship better. Here are some things that we have done. And now the new police chief - not new anymore - but Chief Blais and I are on great terms. We talk together often, not always in crisis. Sometimes we just go to have a cup of coffee so that we can talk about things that we can try to do to make our relationships better. We have an annual service that's attended by police. The police serve as the choir in the service and the congregation loves that. And then after the service they're able to talk with them. We have a reception and everybody can mingle and get to know each other. So we're doing those kinds of things to try to get the community to see that police are here to work with us. We're trying to get back to that model of the community officer that everybody knows and respects and trusts. So that police don't just show up, as Quentrel said, not when something happens, but police are around to interact with our children, our young people in a positive way all the time.

AMT: Quentrel, before we run out of time, I do have this statistic from 2012 and Stats Canada, Halifax had the highest rate of gun-related violence in the country. So when you look at that, is that changing? What has to change to confront that? These were all gun deaths.

QUENTREL PROVO: I know. Basically, there's a lot of things that has to change. First, we have to figure out where these guns are coming in. That was said at the march. We have to figure out where these guns are coming in at, because16-year-olds and 17-year-olds are getting guns and they're getting guns easy. So we have to figure that out. We have to talk to our kids as parents, you know, talk to our kids about violence and the consequences. Because I know my parents talked to me when I was young and that was a life that I didn't want to go, you know, down that road. Mom and dad let me know that if you go down that road, you're not going to live under my roof. So we have to talk to our kids and then we have to-- If we know those that are carrying guns and are doing these killings, we got to speak up. And I can't say that enough. We got to speak up before we lose another young man or young woman.

AMT: And you had a lot of people in the streets on Sunday who agree with what you're saying.

QUENTREL PROVO: I do. And that's what a lot of people were like, oh, the march is not going to do anything. It doesn't mean anything. But the march showed that we are united together. That was just a start. That's not going to stop the violence. But that was a start to show that all these people that came out want to see the violence stopped. So we work on from there.

AMT: We have to leave it there, but thank you both for talking about this today.

QUENTREL PROVO: No problem.

RHONDA BRITTON: Thank you, Anna Maria.

QUENTREL PROVO: Thank you.

AMT: Thank you very much. That is Quentrel Provo. He’s a community activist and founder of the non-profit organization, Stop The Violence. He joined us from our Halifax studio. Rhonda Britton is the pastor at Cornwallis Street Baptist Church in Halifax. She’s in Ottawa today. She was in our Ottawa studio. If you missed part of this discussion, you can find it on our website, cbc.ca/thecurrent. You can use the CBC Radio app, by the way. It's free the App Store or at Google Play. I’m Anna Maria Tremonti. This is The Current.

How burglars use city architecture as opportunity for heists and escapes

Guests: Geoff Manaugh

ANNA MARIA TREMONTI: Hello, I’m Anna Maria Tremonti, and you're listening to The Current.

[Music: Theme]

AMT: Still to come, if you knew you had a fifty-fifty chance of developing Alzheimer's, would you want to take a test to find out? It is a real life dilemma for families living with a rare variation of Alzheimer's known as ADAD. That story in half an hour. But first, we're getting into architecture: literally.

SOUNDCLIP

This is the vault at the Bellagio. Located below the strip, beneath 200 feet of solid earth. It safeguards every dime that passes through each of the three casinos above it. And we're going to rob it.

AMT: The fine art of breaking and entering brought to life on the screen by George Clooney and Brad Pitt in the film, Ocean's Eleven. There's something about a daring heist that makes for great moments at the movies. You'll find yourself rooting for the burglars as they burrow their way through fortress-like buildings. And when it comes to a casino vault, let's hope they're feeling lucky.

SOUNDCLIP

VOICE 1: First, we have to get within the casino cages, which anybody will tell you, takes more than a smile. Next, through these doors, each of which requires a different six digit code changed every 12 hours. Past those lies the elevator - this is where it gets tricky. The elevator won't move without authorized fingerprint identification--

VOICE 2: Which we can't fake.

VOICE 1: And vocal confirmation from both the security system within the Bellagio and the vault below.

VOICE 2: Which we won't get.

VOICE 1: Furthermore, the elevator shaft is rigged with motion detectors. Once we get down the shaft, though, then it's a piece of cake - just the most elaborate vault door ever conceived by man. Any questions?

AMT: Well, no question the vault at the Bellagio is a tough one to crack. But what George Clooney and crew are doing there-- looking at architecture as something to be battled with, and defeated -- is common to burglars great and small. Burglars tend to see the world and its buildings quite differently than you or I. And looking at buildings through a burglar's eyes can be quite eye-opening. That's the idea behind a new book by architecture writer Geoff Manaugh. He runs the website bldgblog, and he has written A Burglar's Guide to the City. Geoff Manaugh joins me from New York. Hello!

GEOFF MANAUGH: Hey, thanks for having me.

AMT: Now those heist movies are incredibly popular. Why are we so fascinated by the work of burglars?

GEOFF MANAUGH: Well, I think there are a lot of reasons. One thing that the heist reveals that I think is the most interesting, actually, is that in many ways, we are underestimating the opportunities presented by the built environment. We take it for granted that we have to go down the hallways, or through the doors that the architect put there for us to follow. And burglars basically reveal that all along, we could have been a little bit more aggressive, I suppose you could say, with our use of buildings. And that we can go through walls, we can go down through the roof into buildings, we can sneak up on to the second floor up a tree branch, and that kind of thing. And I think it reveals that, yeah, there's a much more playful and puzzling way to use the built environment.

AMT: We are talking specifically about burglary here, not other kinds of crime. Why is it important to make that distinction?

GEOFF MANAUGH: Well, what's interesting about burglary is that it is an architectural crime. You can't actually have burglary without a building. Burglary requires you to be inside a space that is legally recognized as a built structure. And so that's what differentiates it from things like theft or larceny or pickpocketing, or those kinds of things. And so what's interesting is that you can actually be a burglar without taking anything. It actually is not necessarily a crime of theft. And similarly, of course, you can take things from people without being a burglar.

AMT: How are burglars looking at buildings in ways, then, that other people are not?

GEOFF MANAUGH: Well, I think it comes down to tactics and strategy. So a burglar will look at the same building that you and I might see, but where you and I might see craftsmanship or historical reference or the light and shadow; a burglar would see a convenient hand hold to get up to the second floor, or they would see a deep recessed door that they could hide within, or they might notice that there is a side door around back that they can sneak into without being seen. And so I think it's a really fundamentally different and much more strategic use of buildings, and so they pick up on details that you and I might miss.

AMT: And are architects taking this into account when they do their designs?

GEOFF MANAUGH: I think there are definitely two competing but equally weighted answers for that. I mean, the short answer I’d say would be no, in the sense that architects, at least in my experience of working with and speaking with them, rarely think about security in terms of how they design the structure. There's actually an interesting case that I mention in the book, where there was a museum theft in the Netherlands several years ago, and the building itself was partially blamed for the success of the crime. Because floor to ceiling glass windows that allowed the public to look into the galleries and see the paintings, but also see the schedule of the guards, to see when visitors were in certain rooms, etcetera. Allowed them to effectively memorize the patterns of the museum and get in and steal things. But then the other answer is that architects are thinking about security when pressed to it, and so they'll come up with ways to help fortify a front door. You know, there's a whole class of security architecture that I also explore in the book, through the design of things like panic rooms.

AMT: So let's talk about some of the burglars you highlight, and we have to start with George Leonidas Leslie. Tell us about him.

GEOFF MANAUGH: Well, he's a really fascinating guy. He trained as an architect. He was from Cincinnati, Ohio. This was in the 1860s. And he was from a relatively well-off background, his dad effectively bought him out of the civil war so that he didn't have to fight. And he graduated with honours, he had everything sort of on his side, as far as becoming an architect. And he moved to New York City. You know, that was the place to go, it was cosmopolitan, many exciting things were happening there architecturally, the big super mansions of the gilded age were being built along Fifth Avenue, the Brooklyn Bridge was under construction. But when George Leonidas Leslie showed up, he had something of a moral change of heart, I guess you could say. He decided that instead of putting his design skills to use for the greater good or doing something that would benefit society, he could actually use his architectural knowledge to become a burglar. And so he helped assemble a group of pretty hardened veteran criminals, but then trained them with things like duplicate vaults. Similar to what you see in Ocean's Eleven, in fact. Where they would have a replica of the safe they were going to attack, or they would actually physically build out a lobby that matched the bank that they were going to attack next. And at the height of their criminal spree, they were actually estimated to be behind 80 per cent of all bank crime in the United States.

AMT: It's incredible, because he does already travel in the in the circles. Like, he's not a guy who needed money. He was quite wealthy. And you say he would actually go to parties and he would talk bankers into showing him blueprints.

GEOFF MANAUGH: Yeah, one of the things that you realize when you study security is that actually human vulnerability is one of the key parts. So just social engineering, you know, just convincing someone to let you into a building, or convincing someone to give you information that you don't actually deserve to have or need, is a key part of this kind of activity. And so Leslie was great at that, he was really charismatic, and after all, he was an architect. What's funny about that is that there's no particular reason why you would distrust an architect if an architect comes up to you and says, hey, you know, I’d love to see the floor plans of your house. Or, oh, I understand you're building a vault beneath your department store, or a new vault in your bank. You know, I’m working on one myself, could I check out how you're doing it? I’m having some trouble fitting it into the floor plan. You know, there's no particular reason why you would distrust an architect on that regard. It's almost like distrusting a doctor. But so what I literally love about that is that not only did he sort of convince people to give away information that they shouldn't have, but he also reveals that there is something really interesting about the notion of, if there is anyone out there who understands how our buildings work, and if there is anyone out there who thus knows how to use those buildings against us, it's the people who built them. And so the notion of the architect turned burglar I think is a really interesting and has a lot of metaphoric value as well.

AMT: And George Leonidas Leslie is not the only burglar you highlight. Talk to us a little bit about the Hole-in-the-ground Gang.

GEOFF MANAUGH: Sure, yeah, that's another fascinating story. The Hole-in-the-ground Gang was a group of what's estimated to have been three or four men. They broke into a bank in Los Angeles in June of 1986. What's extraordinary about this is not only the technical skill that they used to get into the vaults, but also the fact that this is still an unsolved crime. We still don't know who committed it. And, in fact, The FBI agent who investigated the crime joked that now it's past the statute of limitations, so even if they wandered into FBI headquarters tomorrow and explained exactly how they did it and had photographs, they couldn't actually be arrested for the crime. But what they did is they had a very, very sophisticated understanding of the city's sewer network. So the storm sewer tunnels would come out of the Hollywood Hills and go underneath the streets. And they knew that eventually, that would come quite close to this bank vault near the Sunset Strip. And so they started a pretty high tech tunneling operation down in the sewers, digging through the Earth about a block and a half to get into the vault. They were actually so good at digging this tunnel, that one of the theories is that they might have had a mining background. So, you know, it's three or four guys from the extraction industry deciding that they wanted to put their knowledge to more devious use. But there were so many details about this that are great. One is that as they drilled into the vault from below, they were making so much noise and causing so many electrical problems in the bank, because they were tapping into the of the bank's own electricity system, that the employees who were calling security, and saying something really strange is happening here, because no vault alarms went off, they started joking that the bank actually was haunted by a poltergeist.

[both chuckle]

AMT: They had no idea, security-wise, that they were that vulnerable?

GEOFF MANAUGH: Exactly. I mean, it's the kind of thing that you wouldn't really anticipate, especially when it feels like a bank crime straight out of Hollywood, the notion that it would actually be happening to your bank, some random bank in the middle of Los Angeles. I don't think it was the first thing to come to mind. And the very fact that they were more willing to believe that there was a poltergeist in the bank than that there was a bank crew, a heist screw tunneling out from below, I think it reveals quite a lot.

AMT: There's another guy, the Roof Man, who was the Roof Man?

GEOFF MANAUGH: Roof Man is also a really compelling and interesting figure. He, too, was fascinated with architecture. You know, for him this all kind of came down to spatial knowledge, but also temporal knowledge. And so Roof Man was a gentleman who was breaking into franchise stores and fast food restaurants all over the U.S. in places like California, Oregon, North Carolina, Massachusetts. But what he figured out was that if you can break into one McDonald's, and if McDonald's is, being franchised, has a similar floor plan. The location of the kitchen, even the placement of the cash registers, and the manager's office are all more or less in the same place. And then also, if you can understand what time of day to do that, because after all, once again, being a corporate franchise, the same kinds of things happen at very particular moments during the day. So when the employees show up to open up the cash registers or to count the money at the end of the day, you know it's happening at more or less the same time. And so Roof Man basically committed the same crime: he would cut down through the roof, he'd drop into the kitchen, and he would rob the employees at these particular moments. But because it was effectively the exact same crime over and over again, he just realized that he could go on this identical crime spree, you know, I compare it to a kind of Groundhog Day of burglary. So he committed the same break-in over and over again throughout the country.

AMT: Was he ever caught?

GEOFF MANAUGH: He was, actually. He was caught twice. The story just gets stranger and stranger. So he was arrested when he was still known as Roof Man, and he was put into a penitentiary. It was revealed that he was actually a former army reservist. But then, actually, he escaped from prison, so he was the first person to have escaped from the prison that he broke out of. And even this, he did it through meticulous timing and planning. So he waited for the delivery truck that came every day at a certain time to show up, and then he escaped beneath the truck. But then the story takes a severe turn for the surreal, where he actually built himself a fake apartment in the walls of a Toys "R" Us. So he constructed a kind of burglary headquarters behind a bicycle rack inside the wall. and I spoke with his second arresting officer, and she compared it to a "little spider hole." Which just sounded like a kind of funny way for a cop to insult someone that she had arrested, but actually, he had decorated the entire lair with Spider-Man posters, and he had Spider-Man bed sheets. And, you know, it was it was almost as if you know a 15-year-old boy had moved in.

AMT: No doubt, he took it from the counters of Toys "R" Us. But that's fascinating. Okay, so let's just stay with this idea of understanding the infrastructure and the architecture and kind of what's going on in a city, because you also meet a former burglar in Toronto. Says he's a former burglar. What was he doing?

GEOFF MANAUGH: Well, so he was he was a really, really interesting gentleman. Yeah, he claims to be retired. You know, I vaguely believe that, although there were indications in the conversation that perhaps he was not as retired as he wanted me to believe. But he had a really ingenious and unsettling way to plan his burglaries. What he had done was figured out that Toronto's City fire code is actually so efficiently and ubiquitously applied that if you understand the fire code, you can make a very accurate guess as to what the internal layout of a building will be before ever setting foot inside it. And so you just look for little clues. These are clues that you and I might never look for, but yet, if you're a dedicated burglar, you'll begin to notice. So it was things like the number of, and the placement of, emergency fire exits. Which would indicate everything from the number of people who lived in the building, even to the number of apartments on each floor; and then even the distance from the doors that lead to the apartments to the fire exits themselves, so that people can escape in the event of a disaster. But then also, things like which doors on which floor would be alarmed. So, you know, not every fire alarm door is alarmed inside a high rise or a hotel or a convention centre. And so the upshot of that is that if you live on a floor that doesn't have an alarmed fire exit, that may be convenient for you if you want take the stairs down, but it's also a great thing for burglars. So they can escape in a hurry and run down to the next floor, or get out of the building all together without setting off an alarm. But so I love this notion that hidden in the very code of the metropolis, this thing that is actually there to keep us safe from fire, if you just turn that information just slightly from a different angle, and you look at it with a more devious purpose, you can use the fire code of the city to plot your next break-in.

AMT: It's fascinating. Now, of course, not every attempt ends well for a burglar. There are some cases where they were thwarted by the architecture, have you got some examples?

GEOFF MANAUGH: Well, sure. So, I mean, the funny thing is that everything I’ve said so far almost makes it sound as if burglars are possessed of genius, the Mozarts of architecture. But what's funny is that actually those stories that we've been talking about so far really are the exception. There's an awful lot of examples, in fact, I’d say the overwhelming majority of burglary stories are pretty much the opposite. They're opportunistic crimes; they're not committed by either the brightest people in the world, or by people who are not really in the right frame of mind when they decide to commit these things. But yeah, there are an awful lot of stories of people getting trapped inside walls. There's one which was a boy, a teenage boy in Milwaukee, who decided to break into a veterinarian's office through the air duct and he got stuck. He actually removed all of his clothes for some reason, thinking, I guess, that would make him more aerodynamic. So he slipped naked into an air duct and was trapped for several hours before the fire crew came to rescue him. But you're constantly reading these sorts of stories where burglars will be unable to break out of the building they broke into, or one great example where one of the burglars actually got scared of the dark, and so called 9-1-1 to have the police come help him, because he thought that there was someone else in the in the building, another burglar who was coming after him.

AMT: My favourite is the guy who decides to wear camouflage so that he won't be noticed. Where does he go, what's he wearing, where does he go?

GEOFF MANAUGH: Yeah, that's a really extraordinary one. It was a gentleman in Oregon, and he was wearing what's known as a Ghillie suit, which basically, it's clothing that's meant to make you look like a plant. Military snipers will wear it to blend into the landscape, so you kind of look like tumbleweed, or you look like a bush. So he put on this get-up making him look like vegetation, and of all things, what his target was a museum of rocks and minerals. And so a man looking like a plant was wandering through the exhibits trying to rob gold and precious stones. And, you know, surprise, surprise, they caught him.

AMT: Well, which brings us to law enforcement. What is being done to try to stop burglars who try to use buildings to their advantage?

GEOFF MANAUGH: Well there's an awful lot, actually. And the ingenuity is definitely active on the good side of the law. So the people who are trying to prevent burglary are also coming at this from a really creative and innovative point of view. One of the more interesting stories in terms of what we're talking about with architecture actually came from the U.K. There's this really interesting program over there called the capture house program, and a capture house, aside from also just having a really great name, is actually a fake apartment that's run by the local police where they will take a flat off the market and they will fill it up with furniture. It's a fully furnished place; it looks for all intents and purposes like someone lives there. But then they'll leave a laptop out on the kitchen table, or they'll have an iPad on the couch, or a digital camera right next to the bed. And they'll leave the curtains open, and maybe the window will be ajar. But meanwhile, they've tagged everything in the apartment with a UV reflective spray, so that if you touch anything, you get this on your hands, and then they wait. And so they are actually targeting in most cases a very specific burglar who has an M.O. that they know about, and they're trying to remove that burglar from the community. And so sometimes, they've waited as little as one day. So they set up this fake apartment, this capture house, and then somebody breaks into it within 24 hours. But in another case, they actually waited more than a year, and the guy, or the person, I should say, never broke in once. So I think that the notion that the police are actually running decoy apartments in the cities of England and that that type of program could very easily spread to North America, I just think it lends an almost science-fictional quality to the notion of burglary control. That you may not even be in a real apartment, but something run by the police.

AMT: Hmm. And sometimes it's the actual design of the city itself that can be a challenge for policing. How does the design of a city change the face of crime, specifically burglary?

GEOFF MANAUGH: Well, it does a lot of things. The best example of that from the book is, I was able to spend a lot of time with the Los Angeles Police Department's air support division, which is the world's largest municipal helicopter fleet, they've got 19 helicopters. At any given moment, with some exceptions, there are there are two helicopters up in the air at any given time. But what was really interesting about being able to fly with them was to learn how they see the city, and what they see as the vulnerabilities of the city, and what the very design of Los Angeles has led to. So a couple quick examples there are that in Los Angeles there's actually a whole taxonomy of businesses that the police look out for, and one of them is called a stop and rob. So the stop and rob is a business that is at the bottom of an off ramp, but also at the bottom of an on ramp for one of the city's freeways. So that means that you can literally just stop and rob. You can rob a bank, get right back on the freeway, and be gone in instants. And so what's interesting about that, is that the infrastructural decision that was made in the 1960s to build freeways across the city of LA inadvertently set the stage for a crime wave that emerged over the next two or three decades. And so it got so bad that in the early 1990s, LA was not only the bank robbery capital of the world, but I was seeing a bank robbery every 45 minutes of every workday. And then also little things like the position of LAX, The Los Angeles International Airport, because of really restricted airspace around the airport, these helicopter crews can't actually fly near the airport to track suspects. And so suspects have figured this out, and so many times you will see criminals fleeing the police in the vicinity of LAX and then deliberately driving towards the airport, because they will lose the helicopter tail. And so I love this notion that there's actually an entire neighborhood that presents a kind of blind spot for the police, due to the landing patterns of international aircraft. But the police are, of course, aware of this. But the city itself, the design of the city, does have these sort of chinks in the armour, and you know, every city has its Achilles' heel, or its choke point.

AMT: As you looked at all of this, what has technology done to the, can I say, craft of burglary?

GEOFF MANAUGH: Yeah, it's done an awful lot, actually. You know, and it's both, I guess you could say positive and negative. I mean, the most overwhelming effect of technology is that burglary statistics have plummeted. So burglary, in fact, is not a very common crime anymore. Here in New York City where I live, since 1990, burglary has gone down 87 per cent, which is really extraordinary. If there's an endangered crime, you know, you would think that burglary would belong on that list. But so, many things are contributing to that. And one of those, of course, is the ease of digital crime. So the notion that you can steal someone's identity, you can steal their credit card information, you can skim their cards, if they're even just buying a pass for the subway, means that there is an ease of digital crime that means that the physical act of burglary, in some ways, is not even worth it anymore. It's such an effort, and the ability to be caught is so clear, that people are turning to other types of crime. And yet also, even within burglary, though, technology is having an interesting effect. The Toronto gentleman who I mentioned also pointed out that one of the things he does now before, or at least used to do before he retired to case an apartment, would be to look up floor plans on real estate sites, you know, something that I’ve even noticed here, if I if I’m invited to a friend's party or house, for example. If you Google their address to see their place on a map, you also will get a lot of hits from real estate information websites. So you can very frequently see the floor plan of their house. You can see staged, professional photographs taken by the real estate team before they moved in, or maybe before the people before them moved in. So you can get a lot of information about people's dwellings before you ever break in, and that's before you even get to the surreal extremes, of people using children's toys to hack into them, and use their cameras to spy on residents of houses to see when they leave. So it gets pretty extraordinary.

AMT: What about burglars? What should we know about those people who work so hard to break the codes of buildings?

GEOFF MANAUGH: Well, there's not much you can do to genuinely predict when or how they will strike. There's little things like if you live on the corner, you're more likely to be broken into, because burglars have lines of sight and many more directions. They can see if the police are coming or the homeowners are returning, but they can also get away along different routes, they're not trapped in a cul de sac. You know, if you have a privacy fence that lets you eat breakfast and not be seen by your neighbors, that same privacy fence is going to mean that if there's a burglar in your house wandering around, your neighbors aren't going to see him or her, either. And so they can take advantage of the same kind of things that you take advantage of. But, you know, you can never say for sure if it's going to happen to you, you just have to be, do due diligence every day.

AMT: Geoff Manaugh, thanks for your work. Thanks for telling us about this.

GEOFF MANAUGH: Yeah, no problem at all. Thanks for the interest.

AMT: Geoff Manaugh is the author of A Burglar's Guide to the City, and he joined us from New York City. If you're joining us halfway through, you can listen to that conversation on our website, cbc.ca/thecurrent. Download the podcast or listen with the CBC Radio App, which is free from the app store or on Google Play. And tweet us, we are @thecurrentcbc. Tell us what you think of his view of the city, he sees things that other people do not. I'm Anna Maria Tremonti, this is The Current on CBC Radio One, Sirius XM, and online on cbc.ca/thecurrent.

Family places hope in drug trial for hereditary Alzheimer's gene mutation

Guests: Dr. Randall Bateman

Hello, I'm Anna Maria Tremonti this is The Current.

SOUNDCLIP

VOICE 1: So, Jerusalem's country, what would you say that is?

VOICE 2: Jordan?

VOICE 1: Would it be Israel? Maybe the next one, what’s that one?

VOICE 2: Bride’s path. Okay, aisle?

ANNA MARIA TREMONTI: Well, crossword puzzles are meant to be a good brain training exercise and that's important for the Toronto area couple you just heard, Ted and Joanne, especially for Ted because Ted has Alzheimer’s disease. He is 51-years old, he was diagnosed eight years ago. Living with early onset Alzheimer's is difficult for any family but that is not all for this family. Ted tested positive for a rare genetic mutation called Autosomal-Dominant Alzheimer’s disease, ADAD. Having the mutation means you will definitely develop Alzheimer's and often, early onset. It also means your children have a 50/50 chance of inheriting the mutation; a 50/50 chance of having Alzheimer’s in their lives. That's why we're not using this family's last name, to make sure their children do not face genetic discrimination when they apply for insurance or even for jobs. Our producer, Karen Marley, visited Ted and Joanne at their home to talk about living with the illness and about a clinical trial that Ted will participate in for a potential Alzheimer's drug.

SOUNDCLIP

KAREN MARLEY: Is that your car in the driveway? What kind of car is that?

TED: Challenger. That hurts me, because I can't drive, but anyway--

JOANNE: I drove it today. We went to take the car for a ride so we went out in the car, so he still enjoys it just on the other seat.

TED: That’s right. I wanted to know and we got tested and it was positive.

JOANNE: That was his first comment when he got the result, was the first thing that he said was my kids because he knew he could accept and, you know deal with that as an adult and he had been prepared to have the result one way or the other but, just the thought of what this could mean for our kids and that they would up to a 50 percent chance of inheriting the gene, that was the hardest part.

TED: [crying] And that's really hard. I don't cry in front of them but it's hard because they're good kids.

JOANNE: Right, so there are five other aunts and uncles that have either passed away and one is still living, but in the advanced ages and then plus his mom, so six of the nine of that generation had ended up inheriting the disease.

TED: I’m not alone, that's for sure.

JOANNE: All the surviving spouses of his aunts and uncles that have passed away have been incredibly-- they all know about Ted and have known for some time, and they've been incredibly supportive because they've all been through it with their spouse, so they're sensitive to me, they try to help me and they're very, very supportive.

TED: The trial was the end of their infusions. I’m going every six weeks?

JOANNE: Every month.

TED: I get a needle and it's easy. It's really, really helping me out.

JOANNE: Of course, selfishly I wanted it to, for my children, to be successful and there be a drug available and I know there are a lot of other families that are suffering with this as well so it's a rare form of the disease and I'm glad it's getting some attention and possibly leading to a cure.

AMT: Well, Ted comes from a big family and the effect of the genetic mutation has been widespread. Three family members are joining me now. Each has a 50/50 chance of carrying the gene, none knows if they do. Debbie is Ted's younger sister, she joins us from Windsor, Ontario. Lindsay and Daniel are Ted and Joanne's kids, they are both with me in Toronto. Hello to all of you.

GUESTS: Hello.

AMT: Lindsay, listening to your dad there, what are you thinking?

LINDSAY: [laughs] It's hard. It makes me tear up hearing him cry because I don't want him to worry about us. This whole thing, as much as it affects us, I don't want to worry about that yet right now. It's focusing on him and what he has to go through and I hate seeing him frustrated with himself for feeling like this is his fault.

AMT: When did you find out that your Dad had Alzheimer’s?

LINDSAY: It'll be almost two years that I've known. I wasn't supposed to find out then, I kind of found out on my own because I had my suspicions and I went searching for clues and I looked at his medication and searched online and things like that but, yeah it was really hard. It's been a hard two years.

AMT: Debbie, you have kids?

DEBBIE: I do, yes.

AMT: What's it like for you as a mother knowing that you, as Ted's sibling, could also be a carrier of this mutation?

DEBBIE: Oh, it is definitely something that's always on the forefront of your mind. I have three children. I have yet to be tested. I will be, and again there is that 50/50 chance that I could have it and I guess, God willing, I don't. Then basically it ends with me and then my children would not be able, they would not get it.

AMT: Daniel, what are you thinking?

DANIEL: I don’t know. It's all a lot to take in right now. Obviously, I know the way he feels about it and I guess just hearing him emotional like that, I’ve never really seen that side of him that much. He's been very strong with us about it, but the last thing I ever want him to feel is like this is his fault, or that we hold this against him, or that's he's letting us down, because obviously he's been kind of a role model his entire life and he still is. Nothing's really changed and he’s doing really well with it.

AMT: He wants to protect you.

DANIEL: Absolutely.

AMT: How old are you, Daniel?

DANIEL: 23.

AMT: And when you found out, how did you find out? What did you think?

DANIEL: I remember he was upstairs, my mom just kind of sat down with me and as Lindsay said, at that point we had already seen some subtle signs of it. I had spoken to my girlfriend about it as well and my mom sat me down and told me he has been tested, we wanted to wait a while to tell you until you started university and were all settled in, but at that point I don't think it really hit me until the next day and I started actually thinking about it. It was a tough few days to get through for sure.

AMT: And you both live at home or not?

DANIEL: I live downtown with my girlfriend.

LINDSAY: I do live at home in the summer, but I go away for school so I'm away for eight months of the year.

AMT: And so, when you're back with him, do you see changes? Do you notice things? How do you react to that kind of thing?

DANIEL: We try to get over as much as we can, of course, and to spend as much time as we can. Yes, you can sometimes see subtle changes but I feel like there will be good days and bad days where you have a lot of good days where you might not even notice a lot of things. And then there will be some days where he is just kind of down on himself, you can see.

AMT: And can you talk to him about it, is it hard to talk about this with a parent?

LINDSAY: He's accepted it and he's not ashamed of it, and so he's okay with us bringing it up or he'll bring it up and we can talk about it, but I try not to because it's still hard for me to talk about—

AMT: You don’t want to be emotional around him?

LINDSAY: No. I am quite a lot, a really emotional person [laughs], but I don't know, it's just really hard still.

AMT: How old are you, Lindsay?

LINDSAY: I'm 19, almost 20.

AMT: So, in what ways has your life changed knowing that your dad has this and that it's a genetic mutation where you have a chance of carrying it as well?

LINDSAY: I think it's really changed my life, to be honest, in many ways. I mean first off, I'm more understanding. Before we knew, I was, I don't know about Daniel, but I would get impatient with him very often when he was asking me the same question over and over and I would think he just wasn't listening to me but, I'm a lot more understanding now and I think it's brought our family closer together. We really put family as the number one priority. We've always been close but we've been brought even closer together and I try to come home as often as I can, and in the negative way, I feel guilty a lot of the time, especially since I found out right before I went away for university. I always question am I doing the right thing by going away when I should be at home and enjoying my time with him. And just knowing about the gene, it also affects how I think about my own future and what I want to do.

AMT: Daniel, what about you?

DANIEL: Probably the most stressful part is just having to watch him go through it because I know he's seen his mom go through it and his family go through it and he knows how it takes its toll. I think, like it's just hard to watch him not be able to do things that he used to do, and seeing him get frustrated because you want to obviously help as much as you can, but I mean, on my life I haven't really thought so much about my future, about how it's going to affect me, because I’m the type of person who says let the future, Daniel, worry about that. I live in the moment more, but yeah, for sure one day I’m going to have to make that decision on what I'm going to do about it.

AMT: Debbie, you've said you will take the test. Do you know when you would do that?

DEBBIE: Probably in the near future. I'm 49 years old now. I don't appear to be showing any signs, however I think it would be prudent to definitely find out 100 percent for sure because we don't know how this manifests, it could be different in each person.

AMT: For you, how big a step is it to go and make that appointment and go through that, Debbie?

DEBBIE: We have so many other family members who have gone through this, so of course there's always going to be a fear, but it's reality. You know, meet it head on, you have to.

AMT: Lindsay, what do you think about a test?

LINDSAY: It's scary but I mean, it has to be done for all of us at one point in our life. I mean, for me and Daniel, we're still young and getting tested at this point, there would be no benefit to it because there's nothing we can do at this point if it comes out positive. I know that at some point in my future, I'm going to have to get tested and it's definitely very, very terrifying.

AMT: Daniel what have you thought about the test?

DANIEL: I don't find it that scary because you see all the advances they are coming out with right now, especially this clinical trial that's going on, so I feel like, fingers crossed, in the near future that maybe they will have a cure for it and maybe they will have found a way. But, like Lindsay said right now, to get tested, it’s a risk that isn't really worth the reward kind of scenarios. It would be great to find out that I don't have it or to find that Lindsay doesn't have it, but at the same time, if one of us does have that gene, it’s going to be even harder to hear that one of our siblings is going to have to go through that one day, too. At this point, like she said, I don't think it's really worth getting tested until maybe the near future when we do start thinking about having our own children and the repercussions on them.

AMT: Outside of your own wider family, do you know anyone who's going through something like this, with specifically this genetic mutation for Alzheimer’s?

LINDSAY: No, I don’t know anyone.

AMT: Is that isolating?

LINDSAY: In a way, I mean everyone around us is very supportive, but at the same time, when you tell people, which I haven't done until very recently, but they're supportive and they try to be sympathetic but no one really knows what we're going through and can understand how it feels.

DANIEL: I think the biggest thing is when people hear Alzheimer’s, they don't fully understand. You hear Alzheimer's, you think memory loss, but moreso than that, it's more about just having to watch someone you love not being able to do the things that they used to do so well. That stuff is slowly being taken away from them little by little, not knowing exactly what's going on. I think that's probably the hardest part of it. So, as much as people hear Alzheimer’s and say oh yeah, we don't have to worry about that until we’re old, they don't understand that there's actually a genetic mutation within it.

AMT: There is going to be a conference of families with this type of genetic Alzheimer’s this summer in Toronto. Is that something any of you are interested in going to, to meet other people going through this? Daniel?

DANIEL: Absolutely. I think it'll be great for our family to go to. I would say especially for my mom and my dad because my mom, she spends a lot of time with him, and so I think it’ll be great for them especially to interact with other families going through this. I think maybe it will give them maybe some new ideas of things that they can do together to help themselves a little bit.

AMT: What would you want to ask?

LINDSAY: I know one thing that I really struggle with is figuring out how to help him without making him feel that I'm babying him. Sometimes I'm torn between should I go and just do it for him so it can get done and he can you know have his food or whatever, or should I let him figure it out on his own? But then, I don't want him to get frustrated. I don't know how to deal with that and maybe talking to some other families to see how they deal with those sorts of things would be great.

AMT: Now, your dad is part of this clinical trial for drugs that researchers hope will slow, or maybe possibly even stop the progression of Alzheimer’s disease. What are you thinking about this trial?

LINDSAY: [laughs] It's amazing. I'm super excited about it. When he got approved for it, we were overjoyed that he was going to be a part of it. I think it'll do great things for us.

DANIEL: I think that's exactly it. It’s the hope factor. Whether or not it does end up panning out is just-- I think it provides us with the hope that you know what, maybe this is the next step that needs to be taken; maybe that this will be the cure or the prevention of it. Either way, it's just, it's being able to look forward to the future and thinking there may be a cure, or there may be hope for us.

AMT: He seems very pleased that he's part of it, your Mom and Dad, both.

LINDSAY: Yeah.

AMT: Debbie, what do you think? Would you want to be part of an upcoming trial yourself?

DEBBIE: Absolutely. You know there are defining factors which make you eligible, so of course it would be solely determined upon that.

AMT: It's interesting, we have so many advances with medical science now that we can actually pinpoint if someone has that gene and that genetic mutation. At the same time that raises issues and raises so many other issues, yes? Once you take the step to the test, what else happens in your mind, what do you start thinking about?

LINDSAY:[laughs] Jobs. Working. I know that's something major on my mind and how companies, if they knew that we had a mutation or there was a chance we had a mutation, how they would react to us having it and possibly you know, not hire us because of that. I know that's something that plays on my mind.

DANIEL: For me, it's more about, well first of all because living with knowing the fact that one day, even though you may not be experiencing the signs, one day you're going to start experiencing them and you can go through all of that, so that's just something that definitely weighs on my mind. And then of course, future children. The fact that now, when I have children, my kids could have a 50/50 percent chance of having it as well, that’s why I think I would lean towards taking the test because if I do find out that I do have it, I know with medical research all that stuff they may be able to find a way to ensure that my children don't end up growing up with it. That would be huge if medical research could do that.

AMT: Lots of questions you didn't think you'd have to be asking yourselves.

LINDSAY: Yeah. Before we knew about it, I mean we knew that we had Alzheimer’s in our family from our grandmother and my dad's aunts and uncles but, I don't think we really understood that it was a genetic form of Alzheimer’s or what it really meant for anybody as the family was all up north, so we didn't really see them very often and see what they had to go through. It's a lot scarier now.

AMT: You want to say something, Debbie?

DEBBIE: Oh boy. Well, you try not to be devastated by the fact that you may or may not have it, specifically if you might have it. You wait until you get the test and you're hopeful and, as Lindsay said, we have a lot of family, most from up north, and we really didn't see them that often, but there was always word of what was transpiring, progressions, the regression. It's troubling. It's troubling especially when you already have children. You have to think towards the future, but again the advancements that are happening, I strongly believe that there's going to have a cure soon.

AMT: Thank you all for talking about this today.

LINDSAY: No problem, thank you.

AMT: Well, Debbie's brother Ted has a genetic mutation causing early onset Alzheimer's. Debbie joined us from Windsor, Ontario. Ted's son and daughter, Lindsay and Daniel were both in our Toronto studio. Dr. Randall Bateman has met a lot of families with the rare Autosomal- Dominant Alzheimer’s disease mutation. He is the director of the ongoing clinical drug trial of which Ted is a part, and which specifically involves families with ADAD. He also has been involved in organizing conferences that bring ADAD families together with researchers, pharmaceutical companies, and other experts in the field. The second of these takes place in Toronto in July. Dr. Randall Bateman is the Charles F. and Joanne Knight Distinguished Professor in neurology at Washington University and Director of the Dominantly Inherited Alzheimer Network Trials Unit, also known as DIAN-TU. He's in St Louis, Missouri. Hello, Dr. Bateman.

RANDALL BATEMAN: Good morning, Anna Maria.

AMT: As you listen to that family, what were you thinking?

RANDALL BATEMAN: I was thinking that they, like many other families that have Autosomal-Dominant Alzheimer’s disease, are struggling and dealing with the fact of the genetic inheritance, which we now can predict with a test, and that they're dealing not just with the disease, but with the future prospects of what it might mean to them.

AMT: And as you heard, there is a lot of hope placed in this clinical trial. How do you deal with high expectations?

RANDALL BATEMAN: Well, first we try to meet them and second, we try to make sure that those hopes are realistic and clinical trials and medicine in general, the development of treatments is a challenging process. Trying to discover a treatment which will change the course of a disease, that to date has not been affected, is certainly a scientific and medical challenge. The field has advanced to the stage now where we think this is possible and it was the impetus to launch prevention trials to try to stop Alzheimer's disease before the symptoms begin.

AMT: So, tell me more about the trial. How is it being conducted?

RANDALL BATEMAN: The trial is a trial specifically for ADAD like Ted's family and people who are eligible will have identified a mutation in one of three genes that causes this Autosomal-Dominant Alzheimer’s disease. People can register at several places, including the internet, and enter the trial and be tested on one of several drugs which are now being tested to determine if they can change the course of Alzheimer’s. These centres are located throughout North America and Canada and the US, as well as Australia and Europe and we're preparing to launch a second phase of the trial in the near future. The trial is really quite different than most typical trials where a single drug is tested and people are randomized one to one to the active drug versus placebo. In this trial, which was largely influenced by the design of multiple family members, we've launched the trial with two different drugs and randomised people so they receive a 75 percent chance of getting the active drug, and only a 25 percent chance of receiving the placebo. The goals of the trial are to try to slow to down, or even stop the progression of Alzheimer's, as I said, even before the symptoms appear. And so people can enroll in the trial even before they have symptoms. As you heard, Ted is in the trial and he has had symptoms for a couple of years, but other family members who may have the gene can enter the trial and be assigned to either the active drug or the placebo.

AMT: And how do you determine how it's working?

RANDALL BATEMAN: Careful tests are done throughout the trial and it is an extensive battery. People come in once a year for extensive clinical and cognitive testing as well as a series of what we call biomarkers. These are measures of the disease, Alzheimer’s disease that occurs in the brain. And that involves multiple scans including MRIs and PET scans, as well as cerebral spinal fluid through lumbar puncture. These are measured carefully to determine the effects of the drug on their targets; on what they're trying to do within the brains of these family members. In addition to that, these cognitive tests carefully track how people's thinking is doing over four years, with the goal being to either slow down or stop the cognitive loss that's associated with Alzheimer's.

AMT: Where are you getting the funding for this?

RANDALL BATEMAN: The funding for this trial comes from multiple sources and some of the earliest funding came from the Alzheimer’s Association, a patient advocacy group that saw the need for this very rare population and awarded us a grant to start early. Support also importantly comes from the National Institute of Aging, part of the National Institutes of Health and pharmaceutical partners have all come together to help with the design of the study through the DIANE Pharmaceutical Consortium and the current drugs in the trial ere from Eli- Lilly and Roche, and they supply a large part of the funding to implement this trial for these patient families.

AMT: And why are families with ADAD good subjects for the clinical trial of the drugs you're looking at?

RANDALL BATEMAN: Family members who have these ADAD mutations are some of the only people in the world where we can predict at any point in their lifespan if they will get Alzheimer’s disease, and also predict about when they'll get it. Because the age of onset is fairly typical to within a few years, three to five years, of the average age of onset for a particular family, that allows the trial to estimate where they are in the course of Alzheimer’s. And in trying to prevent Alzheimer's disease, knowing who will get the disease and about when they'll get it, is incredibly helpful for determining the effect of a drug in slowing or stopping that process. And furthermore, the mutations which were discovered in these family members have really led the molecular biology revolution and Alzheimer’s disease research. And many of the drugs which have been developed were actually developed on models that use the mutations from these very families.

AMT: How common is it for, first of all, for people to have this mutation?

RANDALL BATEMAN: It's incredibly rare. So as you heard, this family like many other families, they don't know other family members or other people who have Alzheimer’s at such a young age and inherited from generation to generation. And oftentimes, that does cause a sense of isolation, difficulty in communicating with other people, and it's for that reason several years ago, some of the family members wanted to start some kind of communication where they could communicate with each other even though they were geographically dispersed, we all thought it would be helpful for them to be able to communicate. And so, we initially began with just simple telephone calls, teleconferences where folks could call in and talk with each other. That then progressed to computer webinars and presentations of information and discussions, and most recently, last year, we had the very first global ADAD family meeting that was held in Washington, DC, and it was really a tremendous event.

AMT: Tell me a little bit about what that was like for them to meet each other.

RANDALL BATEMAN: I think it instilled a sense of incredible awe, but also huge relief in the families that had been isolated for so long. 100 family members gathered together in Washington, DC and was supported by the Alzheimer’s Association and the Knight family, who had helped support their travel there, and for the first time these families were meeting other families who had the same disease. The discussions that we had there in the meeting and after the meeting and before the meeting were really transformational for these families. They were able to relate and recognize that they weren't alone; that there was a cause to try to stop this disease, and that they were part of the solution, potentially part of the cure.

AMT: And if this trial turns out to be successful, could the findings be extended to the general population without a mutation?

RANDALL BATEMAN: Many of us think so. The form of the disease, with the exception of coming earlier and being caused by a mutation, is in many other ways quite similar to the later onset, sporadic form of the Alzheimer’s disease that we are all at risk of getting. And so, the biomarkers, the clinical and the cognitive presentation of the disease being similar, suggest that advancements that we’re able to make for these families will likely translate to the whole population.

AMT: And so how long do you expect this trial to last?

RANDALL BATEMAN: The trial is well underway now, and we finished the first part of the enrollment in 2015. And so, we know that there will be interim results that will come out over the next one to three years, and the final results will be known in less than four years, the outcome. As part of the trial however, we're actually continuing to add some of the latest developments in drugs, the newest drugs, into the trial so that we can open up new drugs and new arms into the trial so that we keep searching for those drugs which are most beneficial until we find highly effective treatments.

AMT: Okay, well Randall Bateman, thank you for telling us about your trial.

RANDALL BATEMAN: It's my pleasure, thank you.

AMT: That is Dr. Randall Bateman, the Charles F. and Joanne Knight Distinguished Professor in neurology at Washington University and Director of the Dominantly Inherited Alzheimer Network Trials Unit, also known as DIAN-TU. He's in St Louis, Missouri. Let us know what you think of what we've just been talking about. You can tweet us, we are @thecurrentcbc or just go to the web site cbc.ca/thecurrent and click on the contact link let us know what you're thinking. That is our program for today, I'm Anna Maria Tremonti, thank you for listening to The Current.

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Apr. 26, 2016 Full Episode Transcript

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