Woodrow Leake ’66C had never worked with disabled people when he moved back to Atlanta to become president of the Brain Injury Association of Georgia in 2001. At Emory, he majored in English; his Ph.D. from the University of Florida is in political science and philosophy. He had been a professor, a college administrator, a businessman, and a leader in the non-profit sector. What he knew about brain injuries was, well, not much.

Now facts and statistics roll off his tongue with ease. Brain injuries are among the most overlooked and under-reported conditions in the nation, says Leake, with eighty thousand Americans becoming permanently disabled each year. There are 150,000 in Georgia living with brain injury, a figure that jumps by three thousand annually. Brain injury is the leading cause of death and disability among people aged 16 to 35.

“It’s a whole new class of disability,” Leake says. “The numbers are pretty astounding. The number of disabled people is growing, because technology is saving more lives every year. It’s a problem all across the country. If you take HIV/AIDS, breast cancer, and spinal cord injury, add them all together and multiply by six, it still does not equal the number of brain injuries. Every year brain injury kills more people than we lost in the Vietnam war. Yet it does not get a lot of attention nationally. It’s just not on folks’ radar screens.”

But Leake means to change all that. As president of the Brain Injury Association of Georgia (BIAG), he has become a visible and vocal advocate for brain injury patients and their families. Last December, he also was appointed by then-Georgia Governor Roy Barnes to the Trust Fund Commission on Brain and Spinal Cord Injury, the body that oversees a trust fund established by the state legislature in 1998. Barnes and the Department of Community Health have declared brain injury to be the foremost health problem in Georgia.

“Woodrow’s work with the Brain Injury Association over the past year and a half has been outstanding,” says Samantha Renfro ’94C, board chair for the BIAG. “I can speak for his hard and effective work in raising awareness in the community and state regarding the epidemic of brain injuries.”

Renfro, who is director of executive education for Emory’s Goizueta Business School as well as a College alumna, can also speak from the heart about the gravity of this problem. In 1980, her own daughter, Debbie, sustained a serious brain injury in a car crash, and her family’s life crashed as well. When Debbie emerged from a coma after six weeks, doctors suggested she be placed in a facility, but Renfro brought her daughter home.

She has been a brain injury activist ever since. A single mother who needed to work to support her daughter’s care, Renfro quickly grew frustrated with the limited options available to her. She was instrumental in securing the Medicaid independent care waiver program, which allowed Debbie and other brain injury victims to have full-time care in a place of their own. Twenty-three years later, Debbie lives independently, with a caretaker, and has a part-time job. Renfro recently helped her move into her own house.

As a board member for the BIAG, “I want to give back to them because their mission is to help people with brain injury have a better quality of life,” Renfro says. “People don’t realize there are 5.3 million living with brain injury in the U.S., and those people and their families are experiencing the same things I did: your loved one has basically died, and there is this new person that has lifelong problems.”

“If a person with a brain injury lives,” Leake echoes, “they will often be dramatically different from how they were before. It’s like living with a stranger. When a spouse sustains a serious brain injury, the divorce rate is astronomical. And after the injury, you don’t get a lot of information about what you’re going to be facing.”

That’s where the BIAG comes in–literally, in many cases. One of the main services the organization offers is a family assistance program, through which staff and volunteers will do everything from coming to the hospital to provide reassurance and information immediately after an injury has happened, to bringing dinner and cutting the lawn during the recovery stage. The BIAG can offer particular expertise in helping patients and their families locate resources and navigate the health care, insurance, and Medicaid systems. “We will basically do anything the family needs,” Leake says.

The BIAG runs five overnight camps each summer, three for those with brain injuries and two for their families and caregivers. There are also thirty-one BIAG support groups around the state, serving some three thousand Georgians. The BIAG is one of fifty-three such organizations nationwide.

“Almost everybody I meet in this community impresses me,” Leake says. “Debbie, for instance, is very impressive because she can live on her own and have a job. Another man is permanently in a wheelchair and has great difficulty talking, but he started a computer graphic design business. I wasn’t sure how comfortable I would be working with a disabled constituency on a daily basis, but from day one it has just been a joy. Every single person who has an injury has overcome it in a different way. Some can’t take care of themselves, but all are remarkable, and very involved in wanting to help others like them.”

Renfro says both Debbie and her caregiver recently called to invite her out for Mother’s Day, a pleasure others take for granted but that she never imagined she would enjoy. “Debbie has a job, she goes to church, she has a house now–she has a life,” Renfro says. “It’s the kind of life any parent wants for their child.”–P.P.P.



© 2003 Emory University