Reeve Foundation

Reeve Foundation
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 start-up 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 and researchers?

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.

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 high-dose 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...

AM: What level of injury?

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 long-term 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…. continued in ABILITY Magazine

ABILITY Magazine Miss International Issue Feb/March 2009
Other articles in the Miss International issue include Senator Harkin — The Christopher Reeve Act; Day of Service — Of Kings & Presidents; Green Pages — Don’t Let Money Fly Out the Window; Humor — There’s Nothing Out there; Film Circuit— Reeling Through Sundance; Skiing — A Crash Course; Multiple Sclerosis — One Day At The Beach; Secret Life — Young Actors Get Their Due; George Covington — Don’t Look Now, Bambi’s Back; Christopher Reeve — His Foundation; His Champions;

More excerpts from the Miss International issue:

Miss International — How She Won the Crown

Ashley Fiolek — Teen MotoCrosser Zooms Ahead

Millard Fuller — His Work Will Go On

Christopher Reeve — His Foundation; His Champions

Multiple Sclerosis — One Day At The Beach

United Cerebral Palsy — Game On!

George Covington — Donít Look Now, Bambiís Back

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