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Email Alerts Media Coverage: 2005-6 | 2003-4 | 2001-2 | 1998-2000 Eastern Wake NewsWheelchair activist makes, touts progressBy SOLJA NYGARD FRANGOS, EDITOR April 6, 2005 WENDELL — The change in Justin Richardson, 24, is literally gripping. Less than two years after suffering a spinal cord injury that left him paralyzed from the chest down, the Wendell resident can open the door and greet a visitor with a firm handshake. Now Justin, who underwent an experimental medical procedure in Israel only days after his near-fatal diving accident, is trying to make legislators get a grip on paralyzed people’s life, care and future. His next chance to do that will be at a national rally in Washington, D.C., April 12. Today Justin, who almost died in August 2003, lives in his own apartment and drives a new Honda to North Carolina State University where he is a full-time student. The political science major hangs out with his friends and goes out on dates. He plans to join a basketball team and admits being addicted to television news magazine programs and game shows. Although his small apartment is adjacent to his parents’ house, his sport utility vehicle equipped for a paralyzed driver and the basketball team he wants to join made of wheelchair-bound players, Justin leads a normal college student’s life — something that was only a distant possibility after the accident. The recovery has been speedy and more extensive than he dared to hope for, Justin said. “I have met my own and my doctors’ goals,” the soft-spoken young man said. "At the moment, my doctors think that my recovery has kind of leveled, but no one knows whether I will progress further at some point. I certainly hope so.” Justin is one of the few people in the world who have undergone the experimental aytologous activated macrophase therapy. The procedure, which was paid for by Proneuron Biotechnologies and done near Tel Aviv, Israel, brings in white blood cells to diminish swelling and tissue buildup that can cause damage after spinal cord injuries. The white blood cells normally promote healing in other parts of the body, but they can't naturally get to the sites of spinal cord injuries. At Chaim Sheba Medical Center near Tel Aviv, doctors drew blood from Justin, then extracted white blood cells and mixed them with skin cells from his arm. Two days later, they injected the mixture into Justin's spine. After the procedure, the physical — and psychological — differences have happened one at the time. The muscles in Justin's arms and hands started working one after another, and today he can use them all, although not on a 100-percent level. He can brush his teeth, get dressed, and, maybe most importantly, push himself around in his wheelchair without help. “Getting my hands and arms back was a huge step for my independence,” Justin said. "Many things, like getting ready in the morning, still take me a long time, but I can do it all without help." Also the muscles in his abdomen and upper back are working, and Justin can once again control his bladder. The latter does not only make his life easier and more comfortable, but gives him back some of the dignity he felt he lost after the accident. “It’s just something you don’t even think about until something goes wrong and you have to,” he said. Pushing himself around in a wheelchair and lifting free weights works his upper body, and to take care of his legs, Justin uses a machine that looks more like an elliptical trainer than a piece of rehabilitation equipment. Justin uses the machine, which enables him to stand and glide in place, for an hour five times a week, while he shouts out answers to the TV set showing “Jeopardy.” Besides enabling him to be 6 feet tall again, the Easy Stand 6000 Glider makes sure Justin can once again walk when he is ready — something he believes will happen. During the past several years, more researchers than before have started believing that curing paralysis will be possible one day, maybe in 12 or 15 years. For Justin, that is reassuring to know. “I’m content with my life now, but I’d be lying if I said I don’t hope that I will be able to walk again,” he said. The diving accident and the following events in Israel and Denver, Colo., where he spent two months in rehab, changed the former swim instructor and lifeguard psychologically, too. While his family has always been close, Justin’s accident brought the Richardsons even closer together, first when his parents, siblings, cousins and girlfriend were trying to find a cure — any cure — for him, and later, when they were helping him start his life again. “I actually prefer to play poker with my family over going out with my friends on a Saturday night,” Justin said. “Especially since many of my family members play even worse than I do.” For his brother, Ray Richardson, seeing how Justin has handled his life after the injury has been amazing. While his siblings teased him for being the family's golden child — someone who always seemed to land on his feet — Justin's ability to bounce back was still surprising, Ray said. "Before all this, he was my brother," Ray said. "Today, he is my hero for not giving up." The accident also strengthened Justin’s desire, which started burning after the Sept. 11, 2001, terrorist attacks, to get involved in public affairs. He plans to work in disability advocacy, possibly in Washington, D.C., after graduating from college. “This sounds like a cliché, but before the accident, I was thinking about the financial aspects of a job, while now I want to work for something I believe in,” he said. Justin’s next big chance to try to make a difference comes next week, when he travels to the nation’s capital to take part in a rally organized by Cure Paralysis Now advocacy group and its Web community CareCure. Justin and about 200 other people will gather in Washington to talk about the importance of spinal cord injury research. The group, which represents about 9,000 people, is lobbying for passing the Christopher Reeve Paralysis Act. It is also asking legislators for funding to establish a spinal cord injury clinical trial network in the United States, and trying to get the National Institutes of Health and other federal agencies to place a higher priority on spinal cord injury research. The Christopher Reeve Paralysis Foundation says the act, which was introduced in the U.S. Congress in November 2002, will create the structures necessary to improve and coordinate research, rehabilitation and quality of life programs for the paralyzed community. The foundation plans to reintroduce the bill this month and hopes to be successful in getting it passed. "There has never been legislation that addresses the needs of the paralyzed community," Michael Manganiello, vice president of the foundation, said, adding the act covers all paralyzed people, not only those who suffer from spinal cord injuries. "After trying to make progress for years, we believe that a piece of legislation might be needed to improve the situation." The rally’s participants are also asking legislators to allocate $300 million over three years to establish a clinical trial network in the U.S. Clinical trials are research studies that provide data about risks and benefits of various therapies. Many centers do not have enough patients with a given condition to carry out clinical trials quickly, but joining forces would enable them to test therapies faster. Clinical trial networks are the most rapid and cost-efficient approach to testing therapies, Cure Paralysis Now said. Overseas, therapies restoring modest function and sensation are already being tested in clinic trials, and many Americans like Justin have traveled to countries such as China, Israel and Portugal to participate in them. But while Justin was fortunate to be accepted into Proneuron’s experiment, not everyone is as lucky. Many patients also lack necessary funding for medical costs and travel. Justin said there are several hundred people who are on waiting lists for various trials and several thousand others who simply lack the means to participate. “It would be so much better if we had a clinical trial network for translating these therapies to human application here,” he said. To help pay for Justin's medical bills that were not covered by his insurance, RE/MAX General Manager Kathy Baker and Wendell Baptist Church organized what was to be a yard sale, but turned into a full-blown flea market in November 2003. Thousands of people turned out for the event, and the group raised about $15,000 for the Justin Richardson Miracle Fund. Justin said he will never forget what the community did for him. "I know a lot of people who could not afford to give anything, but who donated money anyway." While financial and physical restrictions prevent many spinal cord injury patients from being vocal, there is a significant number of them. As many as 280,000 people in the United States suffer from spinal cord injuries, and every 41 minutes, another American sustains a spinal cord injury resulting in paralysis, the National Spinal Cord Injury Statistical Center says. The annual direct costs of care for Americans living with paralysis due to spinal cord injury are estimated to be $15 billion. Justin knows about the need for promising curative therapies firsthand. Besides suffering a spinal cord injury himself, he serves as a reference for Proneuron, telling patients and their families about the procedure he went through. The task is not always easy, though. Desperate family members want to hear success stories, and balancing between realism and optimism is sometimes difficult, Justin said. “I want to give them hope, but it can’t be false hope,” Justin said. “The procedure helped me significantly, but I know cases where patients did not benefit from it. Trying to tell that in a delicate manner can be hard, especially when someone is crying at the other end of the phone line.” Despite the sometimes burdening task, Justin is happy to do it. “A lot of people helped me get through all this, and I feel like I owe this service to my family, my doctors, all the other patients and even to myself," he said. "Of course I didn't want to get paralyzed, but I am happy about the way my life changed as a result of the accident. I feel like I am making a difference, and I love it.” Contact Solja Nygard Frangos at 365-6262 or solja.nygard@nando.com.
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