More than 60 years ago, Henry H. Kessler, MD, founded the Kessler Institute of Rehabilitation, a hospital for people with disabilities. In 1985, he created the Kessler Foundation to continue the mission. Since then the foundation, headquartered in West Orange, NJ, has funneled millions of dollars into programs that promote injury prevention for youth, as well as employment opportunities for people with disabilities. Its research center focuses on improving function and quality of life for people with spinal-cord and traumatic brain injuries, stroke, multiple sclerosis and other neurological and orthopedic conditions.

ABILITY’s Chet Cooper recently visited the Kessler Foundation to speak with Rodger DeRose, president and Chief Executive Officer; Lauren Scrivo, communications specialist; Trevor Dyson-Hudson, MD, interim director of spinal-cord injury research; Steven Kirschblum, MD, co-director of the spinal-cord-injury lab; and Gail Forrest, PhD, interim director of the Human Performance and Movement Analysis Laboratory .

Chet Cooper: How would you characterize the goals of the Kessler Foundation?

Rodger DeRose: When I came aboard, about four years ago, we were two separate organizations: the research center and the foundation, which was the research center’s primary funder. At that time, the charge was to merge both organizations, and to focus on improvement of the functional capabilities of people who have
disabilities by way of rehabilitation for people with brain and spinal cord injury, multiple sclerosis or who had experienced a stroke.

We had two drivers: expansion of employment and improvement of functionality, so that people with disabilities might enjoy a higher quality of life. We decided we would turn our attention to rehabilitation care and translational research, because if you’re sitting in a wheelchair for 20 years and you lose bone density and muscle mass, it doesn’t matter if you’re suddenly able to walk—you’re not going to be able to stand for very long.

Cooper: It’s not, you might say, sustainable.

DeRose: Right. The uniqueness of our organization is the research component. Several of our patients say things like, “I came in here and I couldn’t walk, and I couldn’t communicate with my loved ones. But now I’m able to talk with family and get out of my wheelchair and stand.” There are some cases in which we can’t make dramatic changes, but we certainly try to.

In terms of expansion and employment, we fund other nonprofit organizations that present business plans and ideas to us that are sustainable, and could create jobs for people with disabilities. We created thousands of jobs in New Jersey during the first eight years after we sold the hospital, and we’re now at the point where we’re starting to expand nationwide.

Cooper: What kinds of business plans and concepts are you looking to support?

DeRose: If a business is training people to enter the marketplace and find employment, that is the return on investment we’re looking for. We’re trying to demonstrate that people with disabilities can service their communities, become taxpayers, and give back in a meaningful way. That’s what we’re about. Our research tries to improve function and reduce secondary complications, so that an individual can get back out into the community. Meanwhile, another part of the organization looks for ways to integrate individuals into the community through work.

Whenever you go to a party, you’re asked your name and then what you do. Unfortunately, 80 percent of people with disabilities are unemployed. If we can set an example for other large foundations to get involved around employment, it will help demonstrate that people with disabilities can achieve great things.

Cooper: And you’re expanding nationally?

DeRose: We are. We will soon review grants proposals, choose recipients, and then disperse funds to organizations across the country over a two-year period. These are large, signature grants valued at about a half-million dollars. It’s enough to help some of these other nonprofit organizations get the kind of funding they need to generate a concept, show proof that an idea will work, and then go out and secure additional funding from other organizations—or from their states—that will leverage the funding that we gave them.

For example, we gave Hudson Community Enterprises in Jersey City, NJ, funding to start a document-management organization and, over the last four or five years, they’ve created a business that reaps millions of dollars and generates profits that are being plowed back into hiring more people with disabilities so the business can expand. They have leveraged our money at least four- or fivefold, in addition to the revenue streams they receive from their clients.

Cooper: Isn’t there anyone saying, “Okay, if that works in Jersey City, why shouldn’t it work in Denver or Miami?”

DeRose: Exactly. Hudson Community currently has a grant with us to expand services to other parts of New Jersey. It’s trying to get to scalability. I think when other organizations that serve the disability community hear about these successes, they’ll try to find ways that they can leverage that idea within their state or within their community.
The business model of some of our grantees, like that of Arthur Prince, is in such demand that states are trying to emulate it. That company, which grows vegetables hydroponically, services restaurants and consumers, and hires people with disabilities, even has international interest in South America.—

Cooper: A project like theirs can go national, or international, because there’s a clear way to adopt it?

DeRose: Yes. We try to choose our grantees for their ability to grow. On our end, we drive planning by hiring the very best people we can. In our research center, we just brought in the thought leader in brain energy from the National Institutes of Health, Jordan Grafman, MD. When Congresswoman [Gabrielle] Giffords was injured, he was the individual the news media frequently interviewed because he’s a leading national expert.

We just hired a leading biomedical engineer from Cleveland Clinic to come in and work with Gail Forrest in the area of human performance engineering. We’re hiring thought leaders in the fields of cognition and mobility from a research point of view, because those are the two areas we focus on.

We also want to ensure we give our researchers the tools they need and the equipment they need. So we’re making strategic investments in products such as the Lokomat, which is a robotic device. In January 2013, we’re going to be putting in an imaging center for brain and spinal cord injury, which will be the first and only imaging center on a rehabilitation campus dedicated to research. You can imagine the kind of pre- and postdata we’ll be able to collect on therapeutic treatment options. We can share that data worldwide with other scientists and clinicians.

The third area that we’re working on is creation of awareness of people with disabilities so that America learns to look beyond disability, and see what every person is capable of accomplishing. Over the last three years, we’ve been taking on our own national public service announcement [PSA] campaigns and, with the mileage that we’re getting on 1,100 television stations and 1,000 radio stations, we hope the message is getting out.

Cooper: What are the PSA messages?

DeRose: They’re up on our website right now: Actor Daryl “Chill” Mitchell agreed to do a series of public service announcements that focus on spinal cord injury. Since his own injury, Chill has had to find ways to compensate and move forward. His public service announcements are about going beyond the disability, and looking at the ability of an individual. Anything we can do to leverage that even further, to get families talking about disability, is going to move society in the right way.

If we educate the next generation, they’re more likely to be open-minded and advance the products and services that help the 55 million people who have a disability in America alone.

Lastly, we’re focused on making sure our organization of about 100 employees works as a team to explore how we can move our ideas along so that we’re on the cutting edge of change and research and helping employment.

Lauren Scrivo: We sponsored two surveys for the 25th anniversary of the Americans with Disabilities Act. One, which was specifically on the subject of employment, was launched down in Washington, DC. The second was launched on the New York Stock Exchange. They showed that employers are saying they want to hire people with disabilities but they can’t find them. Our survey showed that now, more than ever, there are lots of educated candidates, and people with advanced degrees. .

Chet Cooper: Let’s talk about the focus of some of the research being done here. What makes it so unique?

Trevor Dyson-Hudson: Our research is not like you’d find in a laboratory with animals or Petri dishes. It deals with the problems real people with spinal cord injury face from the moment of injury through life and, eventually, on to death. That’s how our whole concept evolved.

Elements of care for people with spinal cord injury came out of World War II, but they weren’t really organized. It wasn’t until the 1970s that somebody advocated for combining things into a model system in which all individuals are brought together as a team. In other words, when somebody is injured today, emergency medical services are aware of the spinal cord injury and the injured person is taken to an emergency room with a trauma team that includes neurosurgeons and orthopedic surgeons.

Cooper: How do they all work together?

Dyson-Hudson: People who are acutely injured are transferred, after they’re stable, to rehabilitation, and then the goal is to try to improve their function as much as possible. The ultimate goal is complete recovery, but just improvement of function is a good start. We perform studies on people ranging from those who are newly injured to those who require long-term follow-up.

We look at things that have the greatest impact on lives, such as bleeding and causes of illness. One area of research that’s interesting is that of respiratory complications, because that’s one of the leading causes of death in people with spinal cord injury. Heart disease has also become a leading cause of death in people with spinal cord injury, so we do research there as well.

I do a lot of research with upper-limb pain and over-usage injuries, because someone who’s pushing a wheelchair constantly, or someone who’s in an environment where they’re often reaching, will develop shoulder pain and other issues. It’s all repetitive strain. So there’s that.

Steven Kirschblum: We focus on the translation of work that had been done in animal models and move it into the human realm. The goals are to improve quality of life and to decrease medical complications, whether those be related to mobility or bladder or bone. We work within our own system and collaborate with others.

Gail Forrest: I work underneath Trevor and Steve’s umbrella of improvement of recovery. Our lab aims to more fully understand mobility function, whether that be walking, standing or reaching. We look at the consequences as they relate to muscle and bone.

It’s easy to get to an end point and see that, yes, we’ve improved a person’s walking or trunk or standing. But the key is to understand why we’ve improved it, because if you understand that, you can tweak the improvement to modify it to potentially enlarge the outcome. I work in electrical stimulation. I’ve received grant funding for that, and I work in locomotor training. I’m trying to better understand what electrical stimulation does to muscles.

Working with our collaborators, we also do bilateral magnetic resonance imaging, computed tomography scans, muscle biopsies, electromyography, and try to understand how that paradigm of electrical stimulation affects the physiology of the person and their neurological gains. It may be that you’re able to increase a person’s ability to stand or walk, but how does that happen? We have toolboxes by which to understand all that.

Within our lab, we predominantly do stroke and spinal cord research. Dr. Karen Nolan deals with stroke and improvement of mobility, while my area is spinal cord and understanding how changes affect the central nervous system. My main goal is to improve people’s ability to stand and walk, because in doing that you potentially affect bladder and bone and muscle and bowel function. This all means a better quality of life.

Cooper: Time and atrophy aren’t concerns?

Forrest: Even people who are chronic can still regain function, whether that be standing or walking.

Dyson-Hudson: With some of the early locomotor-training studies, we’re looking at people who had residual function below the level of the spinal cord injury. Somebody who has a complete injury seemingly has less to work with, theoretically, but even that’s a misnomer. “Complete injury” doesn’t mean the cord is necessarily severed; it means it’s been injured so greatly that the person doesn’t show obvious signs of preserved function. But with some more advanced neurological assessment, we sometimes find some amount of signal is actually getting through.

Cooper: What was your injury?

Dyson-Hudson: My injury was at the cervical level, so I’m technically quadriplegic. “Tetraplegic” is the new term.

I have preserved arm function, but I don’t have hand function. I’m technically “complete.” I don’t have any preserved function below the level of my injury. Today, more and more injuries are actually incomplete. A lot of that is probably due to the way people are handled to minimize injury at the time it occurs. If someone is injured in a football game, the medical team is right there, stabilizing the neck, taking precautions to minimize secondary injury and to preserve function so that it can come back....... Continued in ABILITY Magazine click here to order a print copy or to subscribe Or get a free digi issue with a "Like" on our Facebook page.

Excerpts from the John C. McGinley Issue Dec/Jan 2011-12:

Kessler Foundation — Research That Gets People Moving

John C. McGinley — Expanding His Role

John Sie — And the Global Down Team

Food Deserts — Activists Help Communities Get Good Food

Ashley Fiolek — Befriends Noora, an Iranian Racer

Raketu — Cool Apps for the Deaf and Hard of Hearing

DLRC — A Fight to Protect a Boy and His Dog

Articles in the John C. McGinley Issue; Ashley Fiolek — Befriends Noora, an Iranian Racer; Noora Moghaddas — Befriends Ashley, a US Racer; Humor — To Anchorage With Love Sen. Tom Harkin — Jobs + Education = American Dream; Raketu — Cool Apps for the Deaf and Hard of Hearing; Adaptive Golf — The Fight Over Carts; USBLN — Annual Conference in Kentucky; Kessler Foundation — Research That Gets People Moving; Food Deserts — Activists Help Communities Get Good Food; John C. McGinley — Expanding His Role; John Sie — A Career That Spans Tech, TV and Top Research; Global Down Syndrome — Bringing Their ‘A’ Team; DLRC — A Fight to Protect a Boy and His Dog; Betsy Valnes — On Creating a World Disability Congress; ABILITY's Crossword Puzzle; Events and Conferences... subscribe