Christopher & Dana Reeve — Their Foundation, Their Champions

Though Christopher and Dana Reeve have both passed on, their vision for better outcomes and a better quality of life for people with spinal cord injuries are very much alive. Here Bob Yant, a leader within that organization, and the editors of ABILITY Magazine talk about how the foundation has grown in recent years, and how the field of spinal cord injury continues to expand and show promise.

Bob Yant: The American Paralysis Association was formed in 1982. Then, when Christopher Reeve got injured and joined our board of directors, we made him chairman, and brought our two organizations together. He had a $1 million foundation of his own at the time, and we named the merged organizations the Christopher Reeve Paralysis Foundation. Later we dropped the word “paralysis” and called it the Christopher Reeve Foundation. When Dana died, the name changed again and became the Christopher and Dana Reeve Foundation. It continues to fund spinal cord injury research. One of Dana’s contributions was to add a program called Quality of Life grants, which range from roughly $5,000 to $15,000, and are given to organizations, usually as startup funds for horseback riding, skiing and kayaking programs for people who are disabled.

Maybe six or seven years ago, when Christopher and Dana were still both alive, we applied to the Centers for Disease Control for a grant to tell people about how to live with paralysis. That’s grown into quite a large grant, maybe $5 million a year from the CDC. From that was born this thing called the Paralysis Resource Center in Calabasas, CA. They have information specialists out here and back in New Jersey, who are available to answer questions all day long by phone or email.

ABILITY Magazine: We’ve heard they drive around with a megaphone, too.

Bob Yant: (laughs) There’s a thing called the Paralysis Resource Guide. It’s about an inch or so thick, and it’s got all kinds of information, not only spinal cord injury paralysis, but transverse myelitis, multiple sclerosis, spina bifida.

We also raise money for the research side. That’s going well. For example, when Dana died in 2006, we were about a $14 million-a-year outfit. This year we’re going to pass the $20 million mark. We have a really dynamic guy at the top now.

AM: You make those funds available to scientists for research?

Bob Yant: Right. There are five parts to the research program now. One of them is what I call individual investigator grants or just individual grants. We get requests for proposals from all these scientists worldwide, and every six months there’s a deadline. We get about 100 applications, and we fund 13 to 15. We have a world-class blue ribbon science advisory council. That’s about $2.5 million to $3 million a year that we give away there, and I’m trying to bring on another group that would fund more.

Then we’ve got the consortium: seven or eight top neuroscientists worldwide, including one or two guys in England. Those guys collaborate; they also bring up a whole new generation of spinal cord injury researchers. So they’ll have one or two people in their labs who are considered to be Christopher Reeve interns or trainees. They travel frequently between labs, learning new procedures and conducting experiments.

The third part of the program is the translational research piece, where we translate positive results we get in research on animals into human results. We don’t have much going on there yet, because the animal results don’t quite warrant it. But there’s about $1 million available in that fund.

AM: And the fourth part of the program?

Yant: It’s this thing called the North American Clinical Trials Network. We took seven hospitals, one in Canada, the rest in the US, and said, “OK, some day we’re going to need to have clinical trials, so when we have them, what are we going to have to do? What’s going to have to be in place?” Well, you have to have all these protocols, and standards of measurement to determine whether somebody’s improving or not. They’ve got some really bright doctors involved, and a real nice guy down in Texas is running it. They actually are going to begin testing a drug for acute spinal cord injuries for one of the big pharma companies. They’re going to run this trial through those seven hospitals.

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AM: What’s the purpose of the drug?

Yant: You would give this drug to someone in the first eight hours after a spinal cord injury.

AM: The sooner, the better?

Yant: Right. It would greatly lessen the severity of the injury. There’s good animal data to show that this drug would be beneficial in humans. But it’s tricky to run these trials. There was this one drug that was tested way back in the 90’s. It’s called methylprednisolone, a highdose corticosteroid that’s given to acute spinal cord injury patients. And there’s still an argument as to whether there’s any efficacy with it or not. So the difficulty in testing this new drug is that you’re going to have to give everybody methylprednisolone, because if you don’t, probably the parents of that kid who doesn’t get it are going to sue you. But then you’ve got to give this new drug, and sort out how much of the recovery was methylprednisolone vs. the new drug. These things are complex.

So over the last two or three years, they’ve set up these protocols and measurements, and they’re ready to go. It’s been a long haul. We’re spending about $700,000 a year on that, so maybe $100,000 per center to begin these trials.

The fifth part of our research program is another part that’s funded by the federal government. It’s called the neural recovery network. Basically, it’s treadmill walking, which Christopher Reeve did before he died. You take somebody like me, fully paralyzed, with no treatment or anything, and you suspend him in a harness over a treadmill, start it up, and the therapist places the patient’s feet on the treadmill. Now there are machines out there that are more robotic that take the therapist out and put the patient’s feet on themselves. The cost is upwards of a quarter of a million bucks per machine. But the bottom line there is that there’s this thing in your spinal cord called the spinal pattern generator. It was only discovered 10 or 15 years ago. It’s a group of cells in your spinal cord that is like a brain. If you were to get up and go to the bathroom right now, you would think, “OK, I’m going to get up and go to the bathroom.” Once you’re walking though, you’re not thinking about it any more. You’re just walking. That’s what the spinal cord does, when it’s working right.

Those of us who are paralyzed don’t have that any more, obviously. But with this treadmill walking, it’s basically a feedback mechanism. And so after as little as 30 seconds of being on this treadmill, lo and behold, you just start walking.

AM: Like riding a bicycle?

Yant: Right. Your legs just start moving on their own, even though there’s a disconnect here, because you’ve managed to stimulate that spinal pattern generator. And Reeve used to do it here at UCLA before he died. There’s some pretty famous pictures and videos of him using this thing. These clinics have not able to support themselves, however, because of the lack of insurance reimbursement for this type of therapy. But we’re running this as a real hard-core study, and we’re getting data. That’s the goal.

AM: The insurance is so expensive that–

Bob Yant: —they just won’t cover it. They say–

AM: –it’s not proven therapy?

Yant: Yeah, “They say, ‘What good does this do for the patients?’ ” But there is obviously some benefit there, probably the same benefit you’d get from standing up, patients have fewer bladder infections, easier bowel progams, more muscle mass, better cardiovascular health. There’s probably a whole host of things that improve with this treatment, and that’s what we’re trying to show. But the interesting statement from the guy at UCLA who’s a pioneer in this field, is that this therapy shows that if we were able to bridge that little gap where the spinal cord injury is, there’s a possibility of great function return because the circuitry is still intact down here. If we could regenerate nerves in the spinal cord, there’s a good possibility of recovery.

In San Diego, there are three clinics, where they can take an incomplete patient or partially incomplete patient and, strictly through really heavy physical therapy, help that patient continue to improve. So you’ve got somebody who was never able to stand who, after six months or a year, can stand, take a few steps, progress until he’s walking 50 yards with a walker, and then 100 yards…

Yant: It doesn’t even matter if they’re incomplete. It could be at any level. “Incomplete” means that there are still signals that are passing from the brain to the spinal cord. And those patients have a much better chance of recovery than someone like myself, who has a complete injury. That means there’s a complete blocking of the signals from my brain down to my lower body. So what I focus on is the real basic science regeneration stuff. The last five or so years, I’ve worked to set up a chronic model of spinal cord injury in monkeys that have longterm injuries. We’re trying a type of therapy where you take bone marrow stem cells and transect them with genes that cause nerves in the spinal cord to regenerate.

 Everyone agrees that this is going to be a combination treatment. Remember the first AIDS cocktail; it’s the same thing. There wasn’t just one drug that did it, it had to be a cocktail of drugs that knocked it down. Same thing in this instance.

A drug called cyclic AMP can stimulate nerves to begin growing up in the cell bodies of the brain stem and start the regeneration. If you actually get them going through the entry site, which we can now, it’s probable that we’ll have to keep making injections down the spinal cord to keep drawing those nerves down farther. We need to find some genes that are master genes that turn this regeneration on and off.

The best example we have of this was a Japanese researcher who isolated 20 genes that he thought would turn regular cells into embryonic stem cells, and then over a process of isolation that got down to 20 and then to 12 and finally to four genes that they could use. And that has now revolutionized the embryonic stem cell research deal, because there is a new way to generate cells now. We can do our own cells, so we don’t have to worry about the immune system’s reaction. That’s kind of the strategy that I’m using with one of the neuroscientists, because we did one rough pass-through and there were, like, 240 genes that were activated. So how would you ever run an experiment where you were going to try all the combinations of all 240 genes? It’s not possible. You’ve got to narrow it down. Beyond that, we need new tools to find these genes. There’s a new mouse model that’s been developed where you can look at all 30,000 genes in the mouse and, in particular, track the spinal cord—the corticospinal track—which is the motor one that we need to regenerate. It looks like we can regenerate sensory nerves okay now, but the motor ones, that’s where we need the breakthrough. That’s my five minute spiel.

AM: It was more like 12 minutes.

Yant: (laughs). I’m sure the neuroscientists on our science advisory council have a different perspective.

AM: Who are they?

Yant: Like I say, there are 15 of them or so. They rotate on and off, over the years, so it’s not the same group of people reviewing applications all the time. We have another group that sits on the Research Planning Committee, which oversees all the research programs and makes recommendations about new ways to go in, conduct research and all that.

AM: Internationally, right?

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Yant: Yeah, we fund research all over the world. I think we’re up to more than $70 million worth of research that we’ve funded. We need far more than that, frankly. The government only spends $70 million a year on this, and yet it costs them $10 billion a year to take care of all the paraplegics and quadriplegics in the U.S. So they’re spending an extraordinarily small fraction on it. However, there are a couple of new private players coming on the field. One of them could actually match the amount of money being spent on spinal cord injury research by the federal government. He was a quadriplegic and owned a number of casinos throughout the Midwest; he passed away a while ago, and left almost $1 billion in stock in his foundation, which is mostly aimed at doing spinal cord injury research.

There’s another guy who’s considered to be roughly the third-richest guy in the U.S., Sheldon Adelson, who has hired a guy from UCLA to be the medical director of his foundation. The guy he hired has a brother with spinal cord injury, so that’s become the first focus of that foundation. Mr. Adelson has said publicly that he’s going to put $1 billion into this medical research foundation. According to something I read recently, he’s worth $28 billion.

AM: Would you be trying to work with them right away?

Yant: Absolutely. The other foundation we’re in contact with is the Craig H. Neilsen Foundation. We’ve made approaches to them. I know the gal who runs it quite well; they’re always striving to make sure that they’re funding the best research they can. If I don’t raise the money, I certainly try to direct it to a place that is peer-reviewed or known to be excellent because I’ve seen a lot of money wasted over the years.

AM: Tell us more about your personal story.

Yant: I was in an ocean-diving accident in 1981. I went down with a couple friends to the beach. I wasn’t even going to go in the water, but it was a beautiful day, so I went in, and they were up on the shore at the time. I dove in and I must have gone into shock. I didn’t realize that I couldn’t move, but it felt like my hands were little flippers or something. The longer I was in, I thought, “Man, I could be in trouble.” I was flat on my back looking up at the sky through the water. I could hear one of my friends calling me, and I couldn’t respond. A few seconds later here come these cowboy boots in the water. My friends pulled me out and got me up on the shore.

I was at Hoag Hospital for a month, and then Long Beach Memorial Center for another month getting hyperbaric oxygen, which didn’t help. Next, I spent four months at Santa Clara Valley Medical Center up in San Jose. Those were the days, which shows you how long ago it was, when they would rehab you for like six months in the hospital. Now, with the cost of insurance, it’s kind of a contest between doctors to see who can kick you out the quickest.

AM: Did they have occupational therapy?

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Yant: I don’t know. I think there’s a lot that falls through the cracks these days. The only regional center for spinal cord injury here in Southern California is Rancho Los Amigos.

AM: That’s a famous public facility. A lot of spinal cord rehabilitation research has been done there over the years. It’s highly regarded throughout the country.

Yant: Before Proposition 13, it was the premier place in all of California. When Proposition 13 got passed, it was gutted. So it’s been, for Dr. Waters and the others up there, a struggle to keep it open. But I guess the point is that there is no regional spinal cord injury place in Southern California where spinal cord injury patients are routinely taken. Often if a patient has private insurance, they’ll end up in a small hospital near where their injury was, and that hospital will sort of bleed them out of their private insurance money, and then they’ll end up in Rancho or Long Beach or St. Jude, somewhere else where they have the ability to bill Medicare and Medical or whatever, for the remainder of their stay. So acute spinal cord injury treatment is really lacking. They’re trying to address that at UC Irvine. Oswald Stewart at the Reeve Irvine Center. Do you know Ozzie?

AM: Mm-hmm. Dr. Hans Keirstead is also over there; he’s one of our buddies, too.

Yant: Oz is developing this clinical spine initiative at UC Irvine. The idea is a state-of-the-art acute spinal cord treatment center. Oz is getting all these protocols and outcome measures, adopting them so that he can begin clinical trials. Beyond that, he promises me that as the chronic treatments come along, they will be able to develop into a chronic treatment facility as well.

There’s another new player. Susie Kim, MD, in Orange County. I’m pretty sure that, like me, she had a body surfing accident and broke her back. She was a med student at USC at the time. It slowed her down, but she went on to graduate and is a physiatrist now. She’s going to have her own practice, but she’s certainly going to be involved in this clinical spine initiative, too. And Hans, as you might know, has raised money for a building out there.

AM: Tell us a little bit more about this.

Yant: At UC Irvine, where Hans and all those guys are, they had a piece of property adjacent to Gillespie Hall, and they just took the same plans, same architect, everything, and they’re just going to plop down a brand-new Gillespie Hall clone. This way they don’t have to do the drawings, go out to bid, and all that.

At the bottom of that, Hans has already maneuvered to get an entire floor that’s going to be dedicated to spinal cord injury therapy. The idea is that if they can develop embryonic stem cell therapies and other therapies, spinal cord injury patients would come on an outpatient basis to be treated there. And Susie Kim is going to be involved in that. She says, “I don’t want a floor, I want a whole building!” I think she’s going to become a big player in Orange County spinal cord injury care.

The other guy, if you haven’t ever met him, is Roger Severson. Do you know him?

AM: Does he work with Hans?

Yant: No, he’s a lay person. You’ve got to meet this guy. He’s in his late sixties, and is the biggest player in Orange County for spinal cord injury funding and research. He had been a successful real estate developer, and he and a bunch of his buddies were out riding horses back in the hills, when he got thrown off the animal and broke his back.

AM: He didn’t blame the horse?

Yant: Didn’t blame the horse. In Roger’s case, he had an incomplete spinal cord injury. He’s a quad, a walking quad. He walks with one or two canes. He originally started out by funding patients who didn’t have enough money to complete their rehabilitation at the hospital where he rehabbed. He would take these kids who were getting better and better and better, and then all of a sudden, whoops! their insurance money is cut off, so any potential recovery for this kid is also cut off. Roger started this thing called the FCI Fund. He would fund these little kids. It started that way.

The FCI Fund got bigger and more involved, and about 10 years ago, he got on the board of Goodwill of Orange County. The first thing he did was start a program called ATEC. Basically what this is is a giant half a building adjacent to the Goodwill that is set up like offices. They’ve received grants and money from the Spinal Cord Injury special fund, and they take newly-trained people and teach them how to operate an office. If you’re disabled they say, “Look what you can still do with a computer. Or, you can run that copy machine over there; you can send a fax.” That’s been successful. With their recent initiative, they went on a capital campaign through Goodwill, but mostly it’s Roger’s buddies who raised $6 million and bought a building out near the freeway.

AM: The Fitness Center?

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Yant: Yup. So you know about the Fitness Center? I haven’t been out there yet, but I’ve seen the pictures. Because it’s near the freeway, so you don’t have to drive a mile into the middle of Santa Ana or something like that. And they’re going to move this ATEC into that building as well. And they’re going to do therapy there. The best thing they did was set up an endowment for that thing, so they don’t have to worry about raising money. That’s a real luxury for a nonprofit.

AM: Tell us how that works.

Yant: Let’s say your annual budget is $100,000, and your board members say, “Hey, we’re going to create an endowment for this chair.” So we go out and raise $2 million, which gets put away forever. Then we invest conservatively and get like 5 percent return a year. That kicks off $100,000 a year. There’s your $100,000 for eternity, right there. So you don’t have to go out and raise money. With every group that I work with, I push for an endowment. You sort of condense what you would normally raise in 10 years down into one year. It rarely works, because most charities are hand-to-mouth. But that group was wise.

AM: So going after an endowment is a kind of fund-raising strategy.

Yant: Yeah. They don’t quite call it that. There was one large gift of $20 million right at the end of the dot-com era, the largest gift in the history of our organization. And we kind of got fat, dumb, and happy, and for the next five years spent more than we had. Finally, when it got down to around $5 million or $6 million, some of the guys on the board said, “OK, that’s it. Stop. We’re going to start living within our means. We’re going to keep this as an operating fund.” If an organization can ever do that, that’s the promised land, frankly. So they got to the promised land with this Fitness Center. It’s gonna be there through thick and thin now. It’ll be interesting to see how many people come and receive therapy; what kind of synergy they develop with these other places. But it’s definitely going to be a player.

edited by Karen Leventhal — Leventhal is director of the Tarjan Center Service Inclusion Project at UCLA

Bob Yant

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