The Brigance Brigade Foundation, a Maryland-based nonprofit, has announced a partnership with the National Institutes of Health ALS Research Lab to expand research on the racial and ethnic differences among cases of amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.
Despite the over-sampling for minority populations with ALS, the percentage of African-American cases reported is not proportionate to the population, foundation officials said.
“ALS is not spoken about in the African-American community because there are not a lot of African-Americans who are diagnosed with ALS,” said O.J. Brigance, who spent a decade fighting the disease and as an activist on behalf of families with ALS.
The National ALS Registry gathered data from Oct. 19, 2010, to Dec. 31, 2011, and found that 12,187 individuals were living with ALS, a disease more common among whites, males, non-Hispanics, and those aged 60 to 69.
The study revealed that white men and women were twice as likely to have ALS than black men and women; and males had a higher rate than females across all races – with four in 100,000 ever being diagnosed with ALS.
“In 2007, one of the first symptoms I experienced was a loss of strength in my right arm,” Brigance said. “I was playing racquetball and noticed I didn’t have the same power in my swing.
“I also started having twitching in my muscles, which I later learned were called fasciculation’s,” he said. “I didn’t have any family history of ALS. I am what they call a sporadic case, which makes up 95 percent of cases.
“There are also familial cases of ALS, which account for the remaining 5 percent of cases,” he said, noting that ALS is a disease that is diagnosed by process of elimination.
Brigance and his wife, Chanda, started the Brigance Brigade foundation in 2008 to help with the expenses that were not covered by insurance, but were critical to everyday quality of life.
While other organizations raise money for research, Brigance said they didn’t know of any that focused on patient services.
“We were seeing these medical bills roll in and wondered how families pay for this,” he said. “That was the impetus for us starting the Brigance Brigade,” he said. “I am not saying raising money for research is not important. However, we also need to help those living with ALS right now.”
Classified as an orphan disease occurring in a small portion of the population, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.
Officials at the ALS Association note the three words that make up ALS. “Amyotrophic” refers to muscle and nourishment — when a muscle has no nourishment, it atrophies or wastes away.
“Lateral” identifies the area in an individual’s spinal cord where portions of the nerve cells that signal and control the muscles are located.
As the area degenerates, it leads to scarring and hardening — or “sclerosis” — in the region.
ALS has been shown to have a genetic basis and finding genes that causes ALS will help scientist learn how to treat it, yet African-Americans don’t often volunteer for genetic research studies, Brigance said.
Without African-American DNA in research studies, it’s unclear how blacks contract ALS, which could potentially leave the community out of the equation when effective treatments for the diseases are developed, he said.
It also hinders scientists from learning everything about the disease regardless of ethnicity.
NIH needs comprehensive information about DNA from all backgrounds to know more precisely how the disease works so the foundation and the NIH are seeking an increase in enrollment in research studies.
“I would tell anyone diagnosed that even though they have been diagnosed with ALS, it doesn’t have to be a death sentence,” Brigance said. “Will there be changes and lifestyle adjustments? Yes, but living life is still possible.
“I’m not saying living with ALS is easy by any stretch of the imagination — quite the opposite,” he said. “It will test every fiber of your being. However, I also believe that those who walk this journey with ALS have a certain intestinal fortitude and fight to accomplish whatever they put their minds to. Life has a way of preparing us for every trial through previous life experiences.”
For more information or to contribute, visit www.brigancebrigade.org.