The world lost some of its shine when Angela Parker-Brown died on Feb. 17, 2023. The 50-year-old Black woman from Nova Scotia, diagnosed with amyotrophic lateral sclerosis (ALS) in 2018, died from an infection.

Soon after her diagnosis, Parker-Brown reached out to Lesley Choyce, publisher of the Pottersfield Press and her former teacher at Dalhousie University, with a manuscript dealing with her experience with ALS.

“This was all new territory to me,” Choyce tells Black Dollar Magazine. “What really blew me away was the realization that she had written this entire manuscript with this eye-gaze technology. A manuscript can take two to three years before it gets published, but obviously, in this case, it was an important book and time was of the essence.”

She became an entrepreneur despite the illness and blinked her way to finish a 180-page memoir using eye-gazing technology — PCEye — in just two months. “Writing With My Eyes: Staying Alive While Dying,” published in August 2022, left a legacy for her twin daughters, Paris and Parker, and their family.

Parker-Brown's first novel captured a slice of her life with ALS. It explored how “little bits of everything” tried to dim her light one particular day, yet she remained optimistic she’d be back to “full capacity sparkle” the next. The book was released in September 2022, and the response was phenomenal, Choyce says. He says people responded to her spirit and positive energy.

“She wanted to pass on this message about living your life to the fullest, whatever the problems,” he said. “There was just that focus, not just for other people with ALS, but for whatever problems you think you have in your life that is going to set you back — you need to overcome.”

While she had the full support of family, friends and community, many often lack access to life-saving equipment, care, drugs and counselling that can ensure death with dignity. And with medical assistance in dying (MAiD) an accessible option for Canadians, some wonder if investments in palliative care, therapies, and mental health support will increase to assist those with barriers to equipment and staff.

Tammy P. Moore, CEO of ALS Canada, told Black Dollar Magazine, she’s seen stagnancy in increasing funding from the federal government for the care supports available for people with the disease.

“We don't want to see that medical assistance in dying is the option people are given because they can't get the appropriate support,” she says. “We’ve seen the drug approval process improve, but that's just one facet of the consideration of access to therapies. The rest of the process does not respond to the needs of people with ALS, neither in time nor equity, because they're not using mechanisms that make sure that all people with ALS can get access.

“We have taken the position that it’s not that we don’t want people to have a choice, but we don’t want it to be their only choice, We need to ensure proper palliative supports are in place, which means the quality of care has to be up to par.”

Efforts to duplicate the Ice Bucket Challenge have fallen short

The Ice Bucket Challenge raised more than $220 million globally for the cause in 2014 and 2015. The money allowed the U.S.-based ALS Association to increase its annual funding for research by 187 per cent, according to its website. Meanwhile, ALS Canada raised more than $20 million in 2014. The funds were matched by Brain Canada, which helped greatly toward research and care equipment, Moore says.

But after the trend tapered off, so too did support for ALS. As of 2018, the Canadian organization returned to traditional funding levels of $1.5 million to $2 million. Critics of the challenge grew concerned that the activity increased people's propensity to give money out emotionally rather than carefully considering where it would be most beneficial. Some also claimed that it would take funding away from illnesses that affect many more people than those diagnosed with ALS each year. Ice bucket challengers were even criticized for wasting water. Since then, efforts to duplicate the popular campaign have lagged, and critics who said the challenge would detract from other diseases have all but disappeared.

With less money to support families, those diagnosed face stark realities. Data from ALS Canada shows it can cost a family between $150,000 and $250,000 from diagnosis to death, leaving few choices for those living with the incurable disease.

“If you need a power wheelchair, that can cost more than $25,000 to 30,000,” Moore says. “And while it may seem expensive, that essentially becomes somebody's exoskeleton. So, just because they have a tiny bit of movement left in their hand or their head, they control a joystick or move their head to control their head array, which is how they're able to power their wheelchair and maintain their independence, that chair has to flex with them, so they're comfortable at times. They need slings and Hoyer lifts to use. Much of that equipment is not funded by the government,” she says.

As of 2016, Canadian caregivers can claim up to $13,624 in benefits over 26 weeks. The care benefit can be taken within an expanded period of 52 weeks and shared between family members, according to Canada.ca. Apart from that, families must leverage assets, organize fundraisers, or use savings. And with nearly 13 per cent of the 9,950 MAiD deaths in 2021 from neurological conditions, the need for philanthropy to support struggling families is dire.

The business case for charitable giving

Supporting a cause through a revenue commitment can expose your brand to new audiences and help organizations on the ground do the work at the same time. A recent study from Mintel suggests 61 per cent of people aged 41 and under, or 50 per cent of all customers surveyed, stated they would change companies they support if they knew the new one supported a cause they cared about.

Jackie P. Taylor, who has more than 20 years of experience in business as an advisory board member for the New York State Black Business Alliance and an Ernst & Young consultant, agreed with the study, saying that entrepreneurs who tell their stories and demonstrate why they support causes tend to do well with consumers. Taylor, who wrote an entrepreneurial guidebook, “Give Me A Boost! The Under-Resourced Entrepreneur’s Handbook for Growing and Scaling Your Business”, added she believes there’s also an obligation, especially post-pandemic, for companies to do their best to support health care initiatives where possible.

“Health inequities in Black and brown communities have exacerbated since the pandemic,” she says. “So, I think there is an obligation — a moral obligation — that we have as human beings, in addition to being entrepreneurs, to bring that into our business model and make sure that, as we move forward and as we become successful, we carve out a portion of our business and our efforts toward making a difference.”

Canurta founder Akeem Gardner, whose biotechnology research company specializes in hemp studies as alternative forms of medicine, is working to do just that. His business will soon participate in ALS Canada's Pull to End ALS challenge, which requires a 14-person team to pull a 42,000-pound truck to raise money for the cause. The event takes place Sept. 16 at York University, where up to 15 teams will compete for the best pull time. ALS Canada is hoping to raise at least $215,000 and each group is asked to raise a minimum of $4,000.

Gardner believes that his company's hemp-based medicines can be helpful for people with muscle stiffness, pain, inflammation, and loss of appetite. He says he wants to connect with the ALS community and sponsors funding research and care efforts, and he adds the company could begin clinical trials as early as the second half of 2024. The cause is significant to Canurta and its senior medical advisor, Dr. Ethan Russo, who has experience with hemp used to treat people with ALS and neurological diseases.

“He came to us and told us that ALS was a passion project for him, not only because he had close relatives that passed, but because he treated people living with it. He was 100 per cent confident we could treat it with the therapeutics that we're designing. If we can help them not only extend lifespan, but live healthier while they're here, I said 'Let's do it,'” Gardner told Black Dollar Magazine. “We don't want to live in a world where we wait until it's too late before we start looking for better solutions, especially for people of colour who may be impacted by the disease. We don't always get treated (appropriately).”

‘ALS is not a white disease’: Outcomes for racialized communities differ

Dr. Chelsey Carter is an assistant professor of public health in the Department of Social and Behavioral Sciences at Yale University. She has a secondary appointment in the Department of Anthropology.

As a youth, she began working with a non-profit called Extra Hands for ALS, where she witnessed people losing motor skills, muscle function, eating capacity and breathing ability.

“I was just really blown away by the quick progression of the disease. I think that moved me as a young person who was really interested in medicine,” she tells Black Dollar Magazine. “I had this idealized view that all things could be cured by medicine and that all medicine was powerful,” Carter says. “Seeing that there was no clear cure (for ALS), there were no good treatments or way to make people be able to live with this disease — it was devastating.”

Carter wanted to become a neuroscientist to find a cure for ALS, but when searching for encouragement, she encountered educators who discouraged her. Instead, she found a pathway through medical anthropology and focused on Chinese and Indigenous medicines and practices. She also volunteered at the Emory ALS Center — a part of the Emory Brain Health Center in Atlanta — and went to school at Emory University for a Bachelor of Arts in anthropology between 2008 and ‘12.

From there, Carter went to Washington University in St. Louis for her Master of Arts (2015-‘17) and her Master of Public Health (2017-‘21). In May 2021, Carter earned her PhD. Over that time, she studied advanced statistics of those with ALS and found that white people with access to financial resources, health care and equity in their communities often had the best care and outcomes. Those experiences catapulted her into a doctorate program, where Carter wondered, “Where are the Black people with ALS?”

“Is it that we're just not showing up at the clinic? Was it biological? Was it environmental? Over 18 to 20 months of ethnographic research, I started seeing people from three ALS clinics in the St. Louis area and realized it was much deeper than that,” she says.

Doing field research, she spoke with white clinicians who said Black and white people have completely different diagnostic experiences.  

“They were being treated like their symptoms weren’t real.”

Carter later wrote “Finding the Forgotten: Race, Bias, and Care in the World of ALS”, which centres on the experiences of Black people living with ALS (and their families), scientific knowledge production, and how embodied inequality impacts diagnosis, treatment, and engagement in clinical trials. She also launched the Black Genome Project in 2022, an initiative to understand how genetic research affects Black neighbourhoods in St. Louis and how Black communities value genomes and genetic data.

“A lot of medicine and pharma companies weren’t thinking about race as it pertains to ALS,” Carter tells Black Dollar Magazine. “They thought everything was about older white people. I get approached often from government officials and policymakers or from pharma (companies in the U.S.) to help their organizations realize that ‘no, we do have a problem.’”

This is where companies like Canurta can capitalize. Its participation in ALS Canada's Pull to End ALS challenge and planned clinical trials next year could turn the tide for a disease struggling for support. It could also combat the medical industry's traditionalist approach to orphan diseases — neglected conditions whose treatments are often not considered profitable due to their cost to develop and limited patient population — like ALS.

“Our goal here is not only to evolve something that can help people subsist symptomatically but also help them live a longer life to ultimately see if we can stop this disease from progressing as we know it,” Gardner said. “We should be able to eclipse our minimum goal of $4,000 for the challenge. From there, this is where we get a grasp on the community and all the different challenges that are going on, which can emphasize how we run our business, our different corporate initiatives, and our giveback initiatives. We’ve been working to find out what our big breakthrough will be and what we will be able to treat. (ALS) is one of the things we’re committed to.”