Foundation News

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!

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Advancing Research with NIH:

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O.J. and Chanda Brigance recently visited the NIH to tour the Laboratory of Neurogenetics.

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.

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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.

FAQs:
–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.


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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.

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Media & Stories of Strength:

 

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Spotlights:Ezzard_Charles_photo cred

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)