inspiring canadians to live better.

healthing leaf

inspiring canadians to live better.

healthing leaf
mosquito-borne diseases affect up to 700 million people each year. learn more
powered by: valneva canada inc.
home / 世界杯决赛2022

als claims b.c. trailblazer, but his crusade for a cure lives on

greg gowe worked hard to get research going in b.c., now it's up to others to continue that fight

by lori culbert

nov 6 2022
read time 11 minute read
join the conversation
a few hours before he died, greg gowe sent out his last tweet. it took him an hour to write those 27 words, using his eyes to type the message — a technology he’d relied on since the neuromuscular disease als stopped his hands from working.
but his eyes were now faltering, too.
“my fight with als has come to an end. please don’t be sad. life is beautiful,” the north vancouver father of two young children tweeted on sept. 10 at 12:08 p.m.
“live hard. love those around you and come together to #endals.”
the response to his final tweet was a testament to how gowe had chosen to live the remainder of his life, since his may 2019 diagnosis: he fought not just the loss of his limbs and voice, but also the lack of funding, treatment and hope offered to b.c. patients with amyotrophic lateral sclerosis or als, also known as lou gehrig’s disease.
within hours, the goodbye post was retweeted 12,000 times and liked nearly 300,000 times. more than 10,000 people left comments.
“your final words ring true with the inspiring way you have fought this battle. we are better people for having known you. thank you for opening your heart and life to us and lifting (us) up, even with your last breaths,” wrote sandra marlowe, an als patient from kentucky.
powered by
canadian centre for caregiving excellence

advertisement

“thank you for all you shared, greg. you have brought inspiration and strength to many people. we will continue your work to #endals,” tweeted a british woman with the disease.
“you’ve been a sherpa for everybody else going through the als journey,” wrote a tweeter from dallas. “i can’t imagine a more valuable life than yours.”
the outpouring of support was comforting to gowe’s children, maleah, 10, and micah, 12, his wife, adrienne molinski, said in an emotional interview. she wishes her husband could have read the responses, too.
“he would have gotten a real kick out of knowing that his tweet went viral,” molinski said with a sad smile.
adrienne molinski and her children, maleah, 10, and micah, 12, wear #endals t-shirts and hold a photo of their father.
adrienne molinski and her children, maleah, 10, and micah, 12, wear #endals t-shirts and hold a photo of their father. francis georgian / png

gowe’s twitter messages resonated with people on social media, in political corridors, and within families affected by the disease. he was brutally honest, day after day, about battling als, a progressive ailment that attacks nerve cells in the brain and spinal cord, eventually paralyzing every muscle in the body.

“i am going to continue to share the details of my als journey until canada’s governments take meaningful action to #endals,” he tweeted on apr. 18, 2021.
he used eye-gazing technology to tweet several times a day to politicians, academics, and other influential people, as he pushed for new drugs to be approved more quickly, and for more investments in a cure. he continued to do this long after he lost the ability to walk, talk, eat or use the toilet himself.
powered by
obesity matters

advertisement

“he had this vision. and at times i thought, ‘you’re crazy. you can’t do this. you’re sick. let’s focus on us.’ but i also know that once he decides to do something, he’s very stubborn. and he gave everything of himself,” molinski said.

last week, on oct. 27, west vancouver-capilano liberal mla karin kirkpatrick paid tribute to gowe in the provincial legislature.

“not happy with the lack of supports for people with als, funding for als research, and the absence of clinical trials in b.c., greg decided to take up the fight on top of his already personal fight,” said kirkpatrick, who fought back tears as she spoke.

according to the als society of b.c., there are 80 promising als therapies in the late stages of clinical trials but few trials are happening in canada, where roughly 1,000 people die each year from the disease. and no trials are happening in this province, where at least 400 people have the disease at any time.

“british columbians diagnosed with als must travel, at their own expense, to other provinces and countries to participate in als clinical trials. that is their only hope,” the non-profit says on its website . “for british columbians with als, there are no proven effective treatments and no access to promising clinical trials.”

advertisement

change has been promised, but it has been slow in coming. the als society announced in may 2021 that it had raised $5.3 million, including $3 million from the b.c. health ministry, so a full-time specialist could be hired to finally oversee clinical trials here.

gowe was one of the voices who pushed for this, but als advocates are frustrated that, 17 months later, the doctor hasn’t been hired and no clinical trials have begun. they say action is needed urgently, since 80 per cent of people with als die within two to five years of diagnosis.

gowe, who travelled to quebec and alberta nearly 20 times to take part in trials, also co-founded als action canada , the country’s first patient-driven advocacy organization for people with this disease. the non-profit has raised $100,000 in grassroots campaigns over the last two years to pursue its goals of improving access to drug therapies, more clinical trials, and increased government funding for research that could lead to a cure.

“it’s been over 80 years since lou gehrig died. the disease has been neglected and underfunded for decades. we need to make up for all the lost time,” gowe tweeted on aug. 10, one month before his death, tagging the federal and provincial health ministers.

advertisement

gowe left this world frustrated that a cure had not yet been found, but also encouraged that major als research spending is happening in the u.s. and the u.k., and that he had started a movement in b.c. that has left other patients with slightly more hope.
 
here we tell his story.
•
family photo of greg gowe with his children, micah and maleah, before his als diagnosis.
family photo of greg gowe with his children, micah and maleah, before his als diagnosis. francis georgian / png
greg gowe and adrienne molinski met 20 years ago. he was a young lawyer and she would eventually become a teacher in north vancouver, the community where both grew up and where they decided to raise their own kids.
“i’m so lucky i married this man. he was an extraordinary dad,” molinski said.
“he and i talked about it a lot before he passed: these kids have been given so much love … they will have that forever. and hopefully this short reality of the last year or two will make them stronger and more resilient, more compassionate human beings. that was our hope.”
gowe, a star athlete in high school who coached his kids’ sports teams, was fit and 48 years old when he became worried in the spring of 2019 about a persistent twitch in his arm.
the couple was blindsided by the als diagnosis. and also by the lack of any hope — such as from clinical trials or approved drugs — offered to them in b.c.
gowe’s first appointment with b.c.’s als centre took them into a windowless room in the basement of vancouver’s gf strong rehabilitation centre, where there is no full-time specialist dedicated to als. they came armed with questions, but felt they left with only the advice from one doctor who worked part-time in the clinic: with the time gowe had left, he should start ticking things off his bucket list.

advertisement

“our kids were 8 and 6. seeing them grow up is my bucket list,” gowe tweeted about the experience.
molinski remembers gowe’s legs shaking with disappointment on the way to their car.
“he said, ‘that was the most horrendous appointment. we’re never going back there again. promise me we’ll never go back there.'”
that night they searched the internet and found an als specialist in quebec, where clinical trials are conducted. they contacted dr. angela genge and four days later were in her office in montreal’s als centre for excellence. gowe travelled 19 times to montreal and edmonton to participate in clinical trials between 2019 and 2021, stopping only after he was physically unable to fly.
“when i think about the people who don’t know how to do that kind of research online, or who don’t have the financial freedom to do that, they’re stuck here,” molinski said. “it’s heartbreaking.”

after gowe was physically no longer able to work as a lawyer at telus in 2020, he routinely met with other als sufferers who were also frustrated with the b.c. system. that’s when he co-founded als action canada, which is run by patients focused solely on finding a cure, and is distinct from the als society, which lends equipment and provides other services for people with the disease.

advertisement

the motto of als action is “als is not incurable: it is underfunded.”
over the past two years, the organization has met with senior health canada officials and the assistant deputy health ministers of five provinces to push for drug approvals, and run an effective fundraising campaign that led to hundreds of british columbians donating portions of their icbc rebate cheques this spring.
“there are a lot of issues, really serious issues, facing people with als. in canada, and in b.c. in particular, there’s much that needs to be fixed,” said bre hamilton, als action’s executive director, who met gowe when they were teenagers.

gowe was inspired, hamilton said, by the successful i am als movement in the u.s., started by brian wallach, a former staffer of president barack obama, after his diagnosis in 2017.

president joe biden paid tribute to wallach when he signed a historic bill in december to greatly expand funding for new als treatments to $100 million annually between 2022 and 2026.
gowe tweeted on dec. 30 that “what the #endals movement in the u.s. accomplished last week is truly remarkable. it is also repeatable in canada.”

als advocates like gowe have been frustrated by the slow pace of drug approvals in ottawa. the promising new als treatment albrioza  was submitted for approval in june 2021 , but it took it an entire year for health canada to give it conditional approval.

advertisement

“they’re not getting the urgency, that a month or two months for someone with als will determine whether or not you can walk or speak,” said molinski, who decided to make albrioza in a desperate effort to help her husband.
“we took matters into our own hands…. we created, basically, a drug lab in my dad’s basement and his wife and i would make these capsules.”
they bought the raw ingredients — two approved drugs — from a pharmacy, at a cost of about $6,000 a month. this continued until gowe’s doctor in montreal got him into a “special access program” for the albrioza, before it was conditionally approved by ottawa.
als action is alarmed, though, that strict eligibility requirements to take albrioza in canada will, according to a recent university of calgary study, mean most als patients will be disqualified from taking it.
the other major development that has both buoyed and dashed the spirits of local als patients was the provincial government’s may 2021 announcement about project hope, the plan by the als society to hire a full-time specialist to do research and clinical trials at the ubc centre for brain health, where work on other neurological diseases takes place.

“for the first time in nearly a decade, british columbians living with als will soon have a chance to participate in potentially life-changing research close to home,” health minister adrian dix said in may 2021 .

advertisement

this week, though, a health ministry spokesperson said the “active recruitment process” to hire the doctor continues, and gave no indication of when it would happen. the pandemic is one reason why clinical trials have not started yet either, although the official said the government is “moving as quickly as we can” to start them.

the als society has embarked on phase 2 of project hope , aiming to raise $20 million to help fund a team to support the research and clinical trials at the proposed new als clinic. the health ministry has given $2 million for this effort, but did not answer a question about why the non-profit society has to raise money for this type of medical work.

as he continued to do his advocacy work, gowe’s body deteriorated a bit more every day.
 
“his legs got stiff. his arms got stiff. he had trouble holding pens, and then ultimately he could no longer write. and at the same time, he was losing balance, so he had to use a walker,” said molinski, who became his main caregiver, along with other care aides they hired.
in 2021, gowe began using a feeding tube to reduce his coughing and choking. by may 2022, he could no longer speak. by the end stage of als, it was a massive effort to get him into his recliner chair or the shower.

advertisement

“it’s just a diabolical disease. he would often say that the devil has taken over my body,” molinski said.
gowe continued to attend all his kids’ baseball, soccer and field hockey games, right up until several days before he died, even if molinski had to suction large secretions from his airways so that he didn’t choke.
but his fight was coming to an end. on sept. 4, the day before he entered a hospice, the family of four had an emotional goodbye. molinski took photos of the farewell messages he composed for his children.
“the best way you can honour my memory is by living life to the fullest. you will have grief, but don’t get lost in it, support each other and get through it,” he wrote with his eyes.
“i have poured every drop of love into the two of you. when you are feeling sad, find another family going through a hard time and do something special for them. that will make you feel better.
“it’s time for me to go.”
family photo taken after gowe’s diagnosis.
family photo taken after gowe’s diagnosis. francis georgian / png
through tears, molinski said this was very emotional for her children, but they had borne witness to the ravages of als for three years and understood his suffering needed to end.
“we lived and breathed the pain and the hardship of the disease,” she said. “we were all desperate to see him at peace.”

advertisement

arrangements had been made to use medical assistance in dying to end gowe’s life on sat., sept. 10, but his final days were very difficult.

“ we need to end this. i’m in unimaginable suffering right now,'” he had told his wife.

a few hours before his scheduled death, he used his last bit of energy to send out that final tweet — a long, frustrating experience because it was difficult for the technology to understand which letters gowe’s half-closed eyes were looking at to build his words.

“the final tweet was really hard for him to write,” molinski said, but resulted in such supportive responses that left their children feeling “ so incredibly proud.”

six days before his death, on sept. 4, gowe sent out his second-to-last tweet, one that encapsulated his battle with als, but also emphasized that the work he started must continue.
“when i was diagnosed with als, i realized almost immediately that my ‘fight’ was not going to be a fight to be healthy again. no, people with alsm we’re still having to fight to establish that our lives had value and were worth trying to save. we’re still fighting this fight.”
lculbert@postmedia.com
more news, fewer ads: our in-depth journalism is possible thanks to the support of our subscribers. for just $3.50 per week, you can get unlimited, ad-lite access to the vancouver sun, the province, national post and 13 other canadian news sites. support us by subscribing today: the vancouver sun | the province.

advertisement

for more 世界杯决赛2022 and content around diseases, conditions, wellness, 2022年世界杯名单猜测, drugs, treatments and more, head to healthing.ca – a member of the postmedia network.

comments

postmedia is committed to maintaining a lively but civil forum for discussion and encourage all readers to share their views on our articles. comments may take up to an hour for moderation before appearing on the site. we ask you to keep your comments relevant and respectful. we have enabled email notifications—you will now receive an email if you receive a reply to your comment, there is an update to a comment thread you follow or if a user you follow comments. visit our community guidelines for more information and details on how to adjust your email settings.