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.
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.
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.
Its 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. Its just not on folks radar screens.
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.
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.
who is director of executive education for Emorys 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 familys 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
has been a brain injury activist ever since. A single mother
who needed to work to support her daughters 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
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 dont
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.
a person with a brain injury lives, Leake echoes, they
will often be dramatically different from how they were before.
Its like living with a stranger. When a spouse sustains
a serious brain injury, the divorce rate is astronomical. And
after the injury, you dont get a lot of information about
what youre going to be facing.
where the BIAG comes inliterally, 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.
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.
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 wasnt 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 cant
take care of themselves, but all are remarkable, and very involved
in wanting to help others like them.
says both Debbie and her caregiver recently called to invite
her out for Mothers 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 nowshe has
a life, Renfro says. Its the kind of life
any parent wants for their child.P.P.P.