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‘this is going to be epic': als supporters join forces with blue jays on lou gehrig day
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a cut-out of taya jones with lou gehrig at last year's jay game in buffalo. supplied
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when the toronto blue jays host the chicago white sox on thursday afternoon, a very vocal group of fans will be looking to strike out more than just the opposition.
last year, following a grassroots campaign by the als community, major league baseball named june 2 lou gehrig day in honour of the legendary new york yankees first baseman on the 80th anniversary of his death from the disease. with covid-19 restrictions in place at the time, the event was forced to be a virtual affair. this year will be a very different story.
als advocate taya jones spearheaded much of the planning ahead of thursday and will be joined by a few hundred of her closest friends and supporters as they raise awareness for the progressive, incurable disease of the nervous system. the single mother of three is doing her best to ensure the event brings some much-needed attention to als and the struggles patients must endure to obtain the basic services that keep them alive.
jones took a break from a busy week to talk about her healthcare journey, her love of the blue jays and her hope for a better future for als patients everywhere.
tell me a little bit about your experiences with als.
i was diagnosed in 2018. i started noticing weakness in my right hand in july of that year and i was diagnosed in september. i pushed the system pretty hard so that my diagnosis was quick but the average time for someone with als in canada is 21 months, which is ridiculous. i’m actually working on a care pathway with one of the pharmaceutical companies so that maybe we can help people with that.
“my kids are great, they’re like, ‘this sucks, but ok mom, let’s go. we got this.’ they are building resilience and they are strong,” says taya jones (pictured here with her children, from left: saige, mack, taya and rhys). supplied
there’s still no treatment for als — it’s 100 per cent fatal — but now we have three drugs that sort of slow the progression of the disease. at the time, canada didn’t have edaravone, so i procured it from japan. i got myself on that but then you have to figure out how to get nursing care and how to get an iv port implanted and all sorts of other things.
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my neurologist will tell you i’m a force to be reckoned with. i do it as politely and respectfully as i can — with a big smile — but i don’t really take no for an answer. services don’t exist for people with als, so there have been a lot of big fights. the health care system is unnavigable anyway but because my entire career was spent advocating for patients, i have it in me to do these things. i was forced into als retirement earlier this year, but that’s ok because i have filled my time helping others.
how did the event with the blue jays come about?
with lou gehrig day, it just became this tremendous opportunity because it’s the first time we’ve had a national platform for awareness. last year, we did it virtually because of covid-19. the blue jays were playing in buffalo during the pandemic, so they did cardboard cutouts of us in the stadium. my cutout was right beside lou gehrig and it looked like his arm was around me. my kids and i, we couldn’t believe it.
there hasn’t been an awareness campaign like this in the history of als. major league baseball named june 2 for last year and forever more as lou gehrig day. that’s a serious commitment by an organization. i’ve done some work with an american group called i am als, so i’m their canadian representative for thursday. we’ve sold almost 200 tickets for our section for the game and we’re going to take the rogers centre by storm.
one of the hospices that works with me has made sashes for us to stand out and i had t-shirts made. we’ve even got the als clinic — my neurologist and his staff are coming — and we are really looking forward to having a fun day. these are mostly what i would call team taya, these are the people who help me get through the day. it takes a village for me right now. my kids, my caregivers, my friends, my family, everybody.
are you a blue jays fan?
sponsored by:
als society of canada (als canada)
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i was actually at the playoff game when joe carter hit that big home run to win the world series in 1993. i used to work at the centre for addiction and mental health in toronto and i would bring patients to jays games. and then, by a very strange coincidence, a colleague i worked with every day for 12 years, his name was brian, he also got als. it presented exactly the same as me but went on to progress much faster and he passed away last year. he was a big blue jays fan and this is a little bit for him because we spent at least four games together with patients and there are so many funny stories and memories that just the two of us have. his family is coming, so i’m so excited for all of this.
taya jones, a single mother of three, is doing her best to ensure lou gehrig day brings much-needed attention to als and the struggles patients must endure. supplied
what are you hoping to accomplish at thursday’s game?
for me, this is all about awareness. we need to get loud. the more awareness we create — that will lead to donations and donations feed research and research, hopefully, creates a treatment for us and we survive. because, right now, that’s not definitely not the case. probably not for someone like me, but somebody diagnosed in a year or two, they might have a chance if we really get some momentum going.
this is my thing. planning an event like this is in my being and who i am. i have to be careful not to let myself come down too hard from it because it can be harder when you’re really excited about something. i’m fully aware of that and i’m trying to have some plans in the next little while to look forward to but this is going to be epic, honestly.
other than a cure, of course, what would you like to see in the fight against als?
we want this to go from terminal to treatable. they still have no idea what causes als, they just don’t know enough, unfortunately. there are too many questions. we’re too different. it is possible, though, but research is taking too long — we have to speed it up. health canada has to start approving things faster. we can’t sit and wait, on average, an extra year and a half. the u.s. had edaravone (sold under the brand name radicava among others, is used to used treat stroke and als) in may 2017 — we didn’t get it until may 2020. come on, people, this is something that needs to be achievable for all.
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look, i’m dying, i get that. but that doesn’t mean i have to stop living right now. that’s where i’m at with it in my brain. my kids are great, they’re like, ‘this sucks, but ok mom, let’s go. we got this.’ they are building resilience and they are strong.
taya jones can be reached on twitter and found in between sections 207l and 208r at thursday’s game at the rogers centre.
come out and join the healthing team and other toronto als advocates at a lou gehrig day meet-up at the rogers centre on june 2 at 2 p.m. (about an hour before the toronto blue jays face the chicago white sox).to sign up to attend, visit iamals.org. to buy jays tickets for tomorrow’s game, go to ticketmaster.
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