The inspiring story of O.J. Brigance thriving with ALS

Posted at 11:40 PM, Nov 22, 2016
and last updated 2016-11-22 23:40:06-05

His movements are no longer his own. Whether it's help from his longtime nurse Bill or the mobility from his motorized wheelchair, O.J. Brigance is making the most of his life with ALS.

In November, Brigance spoke to the varsity field hockey team at Notre Dame Prep before a semifinal game.

"In the end your destiny will be determined by your execution, your skill and your desire," he said.

Hanging on every word, the students seemed mesmerized by his voice. ALS has also robbed Brigance of his ability to speak, but through eye movements and his computer he still communicates.

"I have been blessed to experience great success and devastating defeat during my athletic career," he said. "In both cases it was the journey and the sacrifice that I remembered."

A 12 year journey on the football field took him to the Super Bowl with the Ravens in 2000. 

Sacrifices would come seven years later when he and his wife Chanda learned about his diagnosis.  At the time he was given three to five years to live.

"My husband is a strong man, so I had no doubt that he'd be able to push and pull through this thing," Chanda Brigance said. "Some people deal with the disease differently, and O.J. would be one of those people I would hold in high esteem and I do because he's able to change his thinking."

Nurse practitioner Lora Clawson runs the ALS Clinical Services Program at Johns Hopkins. She's spent the last 30 years treating patients with the disease.

"We've become more aggressive in managing patients, diagnosing them early, getting them into clinical trials and using what clinical management tools, medication and symptom management we have in our tool box to be able to help the patient live as long as possible within the highest quality of life," Clawson said.

But still, there's no cure.

"God has blessed me on what abilities I still possess to complete my God given assignments here on earth," Clawson said.

One of those assignments for the Brigance's and their foundation is to contribute to the cause, supporting NIH researchers like Dr. Janel Johnson in her race for a cure.

"I don't want to see people suffering from something this difficult," Johnson said. "ALS is something that is so terrible." 

But Johnson needs help taking her 15 years of research to the next level. The NIH currently has more than 200 ongoing clinic trials.

"Year after year new genes for ALS and new risk factors have continuously been discovered," Johnson said.

In 2014 The Ice Bucket Challenge raised millions of dollars for ALS research. That money led to the discovery of a new gene that contributes to the disease.

While that's progress, Johnson said the majority of the research focus has been on following studies based on research from Caucasians DNA. She said she needs more African Americans to join the clinical trials for her research to be more inclusive.

"Treatments are going to be based on the genetic makeup of the individual, so because African Americans are excluded from research studies this has the potential for treatments to be missed," she said.

In addition to prayers for continued progress, the Brigance's are using their own experience to push the cart along, helping others with financial assistance and resources that insurance doesn't cover.

"Our desire is not just to help people living with ALS but see them thrive," O.J. Brigance said.

It hasn't always been easy, but Brigance has thrived living with ALS. In April it will be 10 years. The Brigance's are continuing to touch people through their work with the Brigance Brigade Foundation.

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