Honoring Black History Month
February is Black History Month and the Brigance Brigade Foundation is honoring this time by recognizing ALS in the African American community. It is vitally important to expand resources and research on the racial and ethnic differences across ALS DNA samples collected and we need your help in this effort.
ALS is rare, and African Americans with ALS is rarer. But the battle for a cure and treatment is worth fighting!
Advancing Research with NIH:
The Brigade Brigade Foundation is proud to announce that we are partnering with the National Institutes of Health (NIH) ALS Research Lab to expand research on the racial and ethnic differences across ALS cases collected. While the Foundation’s main objective is to care for those diagnosed with ALS and their families, we recognize there is more to this fight, and we strive to bring awareness to the importance of gathering donations from our PALS (People living with ALS) so life-saving research about treatment and cures can continue.
ALS has been shown to have a genetic basis. Finding genes that cause ALS will help scientists learn how to treat it, yet a troubling fact is that African Americans do not often volunteer for genetics research studies.
Without African-American DNA in research studies, it is unclear how often African-Americans get ALS. Frighteningly, that has the potential to leave African Americans out of the equation when effective treatments for the disease are developed. 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.
Call to Action!
1 – Encourage DNA Donation. At present, there is very little research on the incidence and genetics of ALS in African Americans. As we look to change that, we are seeking an increase in enrollment in research studies. African Americans with ALS and related disorders are strongly encouraged to participate, though all donors are welcome and important. Study participants will be interviewed and asked to answer questions about their medical history. For more information on screening and eligibility, please call 301-451-3826 and reference NIA Study: NCT 018 673 59.
–How are my samples collected? Through saliva (mouth swab) or blood (needle collection).
–Will my sample be private? Yes! The NIH takes your privacy very seriously. Please contact them directly with questions at the number above.
2 – Donate to support the work of the Brigance Brigade Foundation. Your donation of $10.57 or more will equip, encourage, and empower PALS and their families and help us spread the word about vital research.
If you would like your donation to go to support the annual research contribution made by the Brigance Brigade Foundation, simply enter “for research” in the “Donor Scroll” box along with any other dedication or note. Thank you!
3 – Join the ALS Registry. There is currently no requirement for physicians to report cases of ALS. Without mandatory reporting, it is difficult and costly to investigate and describe the incidence, prevalence, risk factors, and clinical course of ALS (source: ALS Association).
The National ALS Registry collects information about patients’ family, medical, occupational and community histories. This information could lead to the cause, treatment and cure for the disease. We encourage all PALS to register! PALS can enroll by clicking here.
4 Voices Unheard:
The following was written by Aleia Asbey, Florida A&M University student who has lost four family members to ALS.
Amyotrophic Lateral Sclerosis has truly left an indelible mark on my life. Every day that I wake up I am reminded of it in some way, shape, or form. This horrifying disease has struck my family not once, not twice, but four times total. Each experience has shaped me into the person that I am today and is the driving force in me to continue to share our story with the world.
In December of 1994, a few months before I was born, my grandmother Willie Bell “Pat” Peterson lost her short battle to ALS. She was diagnosed in October and in two short months succumbed to Lou Gehrig’s disease. She was a mother of six children; 5 girls and 1 boy. There wasn’t much research or information about the disease available at the time. I first learned about ALS when I was 6 years old. At this young age, I witnessed early symptoms with my Aunt Jackie. I was literally seeing my aunt’s physical abilities being taken away from her slowly. First the use of her fingers, then her legs, then becoming weak, then slowly not being able to breathe on her own.
Three years later in 2012, we were left mourning the passing of my uncle Elijah Peterson Jr. after his short battle with the disease. Growing up I was confused as to what I was witnessing. I didn’t understand why these things were happening. I looked forward to the ALS Walk every spring because I found comfort in walking with my family and others who had been through a similar journey. I started to do research on my own, and the little information that I could find about ALS helped me to begin to put the pieces together. The main fact that stood out to me is that 93% of people with ALS were Caucasian.
In December of 2014, my whole world turned upside down when I lost yet another aunt to the disease. Shortly after, I decided to step up, I needed to get this story told and HEARD. My tragic losses ultimately led me back to my childhood passion of writing scripts and since then I have written a screenplay entitled, “4 Voices Unheard” about my family’s battle with the rare disease. I am currently doing everything I can while completing my senior year of college to get this script noticed, and eventually funded to be filmed. Our story and case is extremely rare, but ALS affects anyone!
I have met several African-Americans along my journey of spreading awareness who have the disease or have been affected by it in some way. We do not need to ignore this disease. If you are an African-American with ALS, please register with the ALS Registry and donate DNA samples to NIH. We need as much research as we can get in order to find a cure and Strike out ALS!
In his own words…A Q&A with O.J. Brigance:
Can you tell us a brief history of the Brigance Brigade Foundation?
In 2007, one of the first symptoms I experienced was a loss of strength in my right arm. 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 fasiculations. I didn’t have any family history of ALS, I am what they call a sporadic case, which makes up 95% of cases. There are also familial cases of ALS, which account for the remaining 5% of cases. ALS is a disease that is diagnosed by process of elimination.
My wife, Chanda, and I started the Brigance Brigade Foundation in 2008 to help others with the expenses that were not covered by insurance, but were critical to everyday quality of life. While there are plenty of organizations raising money for research, we didn’t see any focusing primarily on patient services. We were seeing all of these medical bills roll in and wondered how families pay for this. That was the impetus for us starting the Brigance Brigade Foundation.
What should African-Americans, or anyone who is diagnosed with the disease, know most about ALS?
I would tell anyone diagnosed, that even though they have been diagnosed with ALS, it doesn’t have to be a death sentence. Will there be changes and lifestyle adjustments? Yes! But living life is still possible. If a person chooses to fight for their life, there are life prolonging methods to give you the best quality of life available post diagnosis. I am not saying living with ALS is easy by any stretch of the imagination, quite the opposite. 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. With God all things are possible!
What has gotten you through your decade-long battle with the disease?
My faith in Jesus Christ is the primary reason I have been able to keep a positive perspective about my diagnosis. I have been blessed to overcome many obstacles throughout my life and professional career. The framework of faith has framed the situations of my life in such a way that every triumph and tragedy taught me a life lesson of how to persevere through hard times.
For those who are sufferers or have loved ones who are sufferers, what do you believe is the most important factor in fighting ALS?
I believe the most important factor in fighting ALS is to keep your faith and hope alive. As I eluded to before, there will be drastic life adjustments, but we have to hold on to and redefine our sense of purpose. We can’t feel sorry for ourselves over what we have lost. We must press ahead with the abilities and gifts that remain to make positive contributions to our family, friends and society.
Media & Stories of Strength:
- ALS: MORE THAN JUST A ‘WHITE MAN’S DISEASE’ – BlackDoctor.org
- African Americans are critical to helping fight ALS – Baltimore Times
- The inspiring story of O.J. Brigance thriving with ALS – WMAR-TV, ABC 2
- Researchers target African-Americans for ALS clinical trials, Gray TV
- What African-Americans Need to Know about ALS, Baltimore Times
Ezzard Charles (1921 -1975) was a veteran, professional boxer and former World Heavyweight Champion. Known as “The Cincinnati Cobra”, Charles fought many notable opponents in both the light heavyweight and heavyweight divisions, retiring with a record of 93 wins, 25 losses and 1 draw (52 KOs). In addition to his boxing career, Charles was a respected double bass player who played alongside some of the jazz greats of the 1940s and 50s.
In 1968, Charles was diagnosed with ALS, losing his leg strength to paralysis first. Many of his former opponents, and friends like Rocky Marciano, held a fundraiser on his behalf where Marciano called him the bravest man he ever fought. Charles passed away while battling ALS in 1975. (Source: Wikipedia)
Huddie William Ledbetter
Huddie William Ledbetter (1885-1949), nicknamed “Lead Belly”, was a famed American folk and blues musician notable for his robust vocals, folk style standards and early talent on the twelve-string guitar. His music covered a wide range of styles and content including gospel, blues about women, prison life and racism, folks songs about cattle herding and dancing, and news-makers of the time. He also played the piano, mandolin, harmonica, violin and accordion.
Lead Belly spent time in prison but was pardoned and released after writing a song to Governor Pat Morris Neff (TX) seeking his freedom. While imprisoned again later in life, Lead Belly was discovered by John and Alan Lomax, pioneering musicologists who contributed greatly to the preservation of American folk music.
In 1949, while on his first European tour, Lead Belly fell ill and was diagnosed with ALS. His final concert was performed at the University of Texas at Austin but Lead Belly passed away from the disease later that year. He was inducted into the Rock and Roll Hall of Fame in 1988 and the Louisiana Music Hall of Fame in 2008. (Source: Biography.com & Wikipedia)
Charles Mingus, Jr. (1922 – 1979), widely regarded as one of the most important figures in twentieth century American music, was a virtuoso bass player, accomplished pianist, bandleader and composer. His earliest musical influences came from the church, and listening to Duke Ellington on the radio. Mingus eventually settled in New York where he played with some of the top artists of the 1950s, gradually developing a reputation as a leader of musicians.
Throughout his career, Mingus formed his own publishing and recording companies, toured extensively through Europe, Japan, Canada, South America and the United States, and taught a semester of composition at the State University of New York at Buffalo.
By the mid-1970s, Mingus was battling ALS. While he eventually lost the ability to play his bass, he continued composing and supervised several recordings prior to his passing. At the time of his death, he was working with Joni Mitchell on an album that was eventually titled Mingus and featured his compositions with lyrics added in by Mitchell. When asked to comment on his accomplishments, Mingus said that his abilities as a bassist were the result of hard work but that his talent for composition came from God. (Source: Wikipedia and MingusMingusMingus.com)