Harvard senior Allison Kessler, 22, had to take a break from serving as coxswain of her university's men's rowing team this semester. She wanted to join the Senior Class Committee, which plans the major campus events. There was an invertebrate evolution course she was itching to enroll in, in which students traveled to Panama, snorkeling, visiting reefs and collecting specimens to identify in a lab. Plus, Allison had her sights set on volunteering at a campus hospital, on the spinal cord rehab floor.
So far she has done all of those things; in fact, Allison was so busy she was unable to fly home to Chicago for the debut of Terra Incognita: The Promise and Peril of Stem Research, a documentary chronicling the events following a 2001 skiing accident which left her paralyzed below the waist and galvanized her father, nationally renown stem cell expert Jack Kessler, MD, to switch his research focus from peripheral nerve disorders to regenerating damaged spinal cords via stem cells. His unwavering goal, as so clearly evident in the documentary: To help his daughter walk again.
I recently interviewed the father-daughter Kessler team for a story in the Chicago Tribune (which is what you're reading here). Their story was so inspiring that I wanted to share it with readers of the Huffington Post.
Produced by Chicago-based Kartemquin Films (Hoop Dreams) and directed by Maria Finitzo, Terra was inspired in part by a 2002 Chicago Tribune article on the Kesslers. It premiered at Northwestern University in May (Dr. Kessler is chair of the department of neurology at Northwestern University's Feinberg School of Medicine and director of Northwestern's Stem Cell Institute), and will air on PBS in either late 2007 or early 2008.
Allison, her father explains, puts a human face on the heated stem cell research debate. "Many people read about [stem cell research] and it's kind of alien to them," he says. "There are many sides, ethically, and they don't know what to believe. We thought making a movie like this, explaining what we are doing, how we are doing it, would make people think, 'How could you be against this?' I simply do not understand how anybody can be against pain and suffering."
What Dr. Kessler is doing, dramatically depicted in Terra, is restoring movement to paralyzed mice. In his lab, graduate students Vibhu V. Sahni and Vicki Tysseling-Mattiace inject a specially designed nano-gel into the animals, which have been paralyzed so that their hind legs are no longer of use. The gel, however, assembles itself into a kind of spinal cord scaffolding so that neurons regenerated from stem cells can travel across. Audiences watch as, six weeks later, the paralyzed mice regain some use of their hind legs and begin to take steps once again. The gel was designed by Northwestern University researcher Sam Stupp.
Dr. Kessler is meeting with the FDA in July discuss the possibility of using the gel in human trials. "Our hope is we'll have it in humans in a reasonably short time," which in science-speak means about two years. "Science is a very slow thing - it doesn't happen overnight," he says. "Something that could take me 10 minutes to explain could take two years in the lab. So part of this film explains why science doesn't move as rapidly as we want it to."
This helps explain why Allison and other spinal cord injury survivors like her refuse to spend their lives waiting for a cure.
"Am I going to wake up every day, be like 'Oh, is today the day?'" asks Allison in Terra. "'No. Because if I live my life waiting for that to happen, I'd miss out on everything going on now."
Also in the film: Carrie Kaufman, 24, who injured her spinal cord in a diving accident. Though now quadriplegic with partial use of one arm and confined to a wheelchair, Kaufman (whose father, Dale M. Kaufman, MD, is assistant professor of emergency medicine at the Feinberg School of Medicine) provides another strong example of a woman living a full life - she attends DePaul University, paints with a brush in her mouth and has a blog called "This is Spinalcrap" - without hinging her daily activities on hope for a cure. Though she does acknowledge in the documentary, "Regenerating my spine a little bit...even if it could give me the ability to use my hand, could change my life. Anything would be possible if I could just use my hand again. It's like a short term stem cell goal."
Stem cells have the potential to develop into many different cell types or organs in the body; theoretically they can divide limitlessly to replenish other cells so long as the person or animal is still living, according to the National Institutes of Health. In 2006 President Bush vetoed--the first of his presidency--expanded federal funding for stem cell research.
Says Allison, who has not yet seen Terra, in a phone interview from Boston, "My feeling is if it will get the word out about stem cell research, that's a good thing. Even today, some of my really smart friends at Harvard will say, 'Doesn't that [stem cells] come from aborted fetuses?' If these people can have such misinformation, then the general population of the U.S. must have a lot of misinformation." Still, she says the last thing she wants anyone to glean from her story is that she is "this poor little girl and her father is trying to help her walk again."
"My accident doesn't define who I am," she says. "My character was always there. Maybe you didn't recognize it and my accident brought it out for you."
Dr. Kessler was pleased with the outcome of the film, for which Finitzo spent two years following his close-knit family, including wife Marilyn Kessler, MD, assistant professor of obstetrics and gynecology at Northwestern, and other participants. "I think it gives people a very good idea of what it's like to have a spinal cord injury and what it's like to hope." His love and devotion to his daughter, who will be spending a year studying at the London School of Economics starting this Fall and then plans to attend medical school, are palpable.
"You never really believe your children can be that strong and I learned what real courage is about. You don't really know it until you see it day in and day out, inner strength. My daughter does have it and I admire her for it. She told me the very first day [after the accident] she was going to graduate with her class; I set about giving her a little bit of reality, but she did. Nothing was going to stop her."