Atlanta,
27
March
2013
|
03:23 PM
America/New_York

Passion to Find a Cure

Two years after T.J. Atchison, 23, sustained a complete T-7 spinal cord injury in an automobile accident, he became the face of spinal cord injury research in Alabama when the state legislature passed the T.J. Atchison Initiative for Spinal Cord Injury Research and Funding. 

The bill, which was passed in spring 2012, appropriated $400,000 for the University of Alabama at Birmingham (UAB). The university, in turn, created the T.J. Atchison Spinal Cord Injury Research Program and the T.J. Atchison Core Laboratories. The former promotes basic research on spinal cord injury while the latter conducts clinical research.

Having his name on a bill, a program and a laboratory wall couldn’t have been further from his mind when T.J. arrived at Shepherd Center in October 2010. But shortly after he was admitted, researchers invited T.J. to participate in an early-stage clinical research trial to test the safety and efficacy of an embryonic stem cell-based therapy.

A week later, he became the first person with a spinal cord injury in the world to receive the FDA-approved therapy. Later on, T.J. and Tory Minus, a family friend from his hometown of Chatom, Ala., decided to write a book about his experience.

Then in November 2011, Geron, the company that developed the stem cell therapy stopped funding for the research, though T.J. and several other people who received the therapy continue to be followed by doctors and researchers. The findings have been inconclusive.

“I haven’t regained any function so far, but that wasn’t unexpected,” T.J. says. “The point of the surgery was to be sure that it was safe and that there were no after-effects, and so far it’s been successful.”

If anything, the experience made T.J. more determined to help find a cure for spinal cord injury. Through Twitter, Minus introduced T.J. to Roman Reed, a Californian with a spinal cord injury who persuaded the California legislature to appropriate millions of dollars for spinal cord injury research.

Eventually, Reed flew to Alabama and met with T.J., Minus and Sen. Marc Keahey, the state senator whose district in southwest Alabama includes Chatom.

“Roman told us how he got his law passed to fund spinal cord injury research in California,” T.J. says.

Sen. Keahey saw the opportunity to create a program that would help families and, as he wrote in a statement, “serve as an economic engine to the state.” He pointed out that caring for people with spinal cord injury in Alabama costs $515 million a year, and the cost of Medicaid and indigent care was another $143 million.

“T.J.’s Law,” as he called it, would fund research that would benefit people with spinal cord injury and ease the burden on the state’s economy.

T.J. Atchison, right, speaks to a crowd of researchers and legislators about the need to fund spinal cord injury research.

His initiative was added to an education bill and passed without opposition. Minus, who is now the educational liaison and program director for the research program at UAB, says such provisions are rarely removed from the budget in subsequent years.

But T.J. isn’t taking any chances. At Reed’s suggestion, he also created the T.J. Atchison Foundation to raise money to support the UAB programs.

“I thought it would be a good idea to use it to raise additional funds so we can keep the research program in case something happens down the road,” T.J. explains.

A golf tournament was planned for April 19, and other fundraising events may include a marathon and a music festival.

“T.J. is amazing,” says Donald Peck Leslie M.D., medical director of Shepherd Center.  “He’s a bright young man, a wonderful young man, and he’s got a beautiful spirit. He wants to help people with spinal cord injury, and he deserves accolades for keeping spinal cord injury in the forefront of people’s minds. It could be the start of something big.”

To T.J., a senior nursing student at the University of South Alabama in Mobile, the responsibilities he faces are more than a little intimidating. Having his name on legislation, buildings and golf tournaments, he says, “feels surreal, especially when I got to UAB and saw my name on the wall of the research lab. It didn’t seem real to me. I don’t like being the center of attention.”

“T.J. is from a small town,” Minus says. “He’s got core values. He’s an all-American kid, who’s an avid golfer, and loves water sports and hunting. He played football and baseball in high school, and he’s president of the University of South Alabama Student Nurses Association. But he’s very humble. He doesn’t want recognition or fame. He doesn’t care for credit at all.”

But the reality of contemporary fundraising is that potential donors relate more readily to causes with someone’s name on them.

So in November 2012, T.J. presided over an open house for the T.J. Atchison SCI Research Program followed by a meeting of the Foundation’s steering committee. Among those attending were Reed, Sen. Keahey, Minus and Candace Floyd, Ph.D., UAB’s director of research for physical medicine and rehabilitation.

“It was strange to begin with,” T.J. says. “Hopefully I’ll get more comfortable with it. I’m just a college student, and everyone else there has had so much success in their lives.”

Fortunately, T.J. says, his training at Shepherd Center prepared him for something like this. “They educated me so well, and I was prepared after I got out of there,” he says. “I knew I could do everything and live an independent life. And the attitude of everyone working there was one of the best things. You never see anybody without a smile on their face. You never see someone and think they’re having a bad day.”

As for the challenges ahead, T.J. says: “I just think it’s important for us to find a cure, and the only way we can do it is by educating and letting people know what’s going on. When I finish school, I’ll be able to do more with the foundation. That’s my passion: I want to find a cure for spinal cord injuries.”

About Shepherd Center

Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 900 inpatients, 575 day program patients and more than 7,100 outpatients each year.