diagnosed at age 44 with als, this mom and advocate left this world swinging

her first fight was the diagnosis. experiencing a strange weakness in one of her hands, she pestered her family doctor for tests to get to the bottom of what was causing it. she quickly found herself stuck in the sludge of misdiagnoses, like so many people with symptoms of als — because doctors start with the most likely reasons for symptoms, but also, because doctors don’t like telling people really bad news. taya persevered though — she must have known that something wasn’t right — and then, she defined the battle.

in the first few months after finding out she had als in 2018, taya worked hard to access edaravone  — a treatment that was not available in canada — that had been shown to slow disease progression. she had an unflinching supporter in her friend paige wilkins, who, in an interview for healthing’s series how i care, told writer maja begovic that although edaravone was difficult to get, taya advocated for herself and successfully ordered the drug from japan. then she had to figure out the details, like nursing care and how to get an iv port implanted. she also investigated several naturopathic remedies.

“services don’t exist for people with als, so there have been a lot of big fights,” she told writer dave yasvinski in may. “the health-care system is impossible to navigate 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.”

as her condition worsened, paige, who left her job to care for her friend, said that taya was hoping to get access to nurown , an experimental stem cell treatment from new york-based biotech brainstorm cell therapeutics. taya had been waiting for fda approval — unfortunately, the wait for that therapy continues.

i met taya from afar at a blue jays game on june 2. a bunch of als advocates and supporters gathered not only to see the jays play the chicago white sox, but also to mark lou gehrig day — a day named by the mlb in honour of gehrig, the legendary new york yankees first baseman who died from the disease. it was an als awareness-raising event largely spearheaded by taya — a big jays fan — who, flanked by her three children and friends, exploded in a loud cheer when the announcer called attention to the part of the stadium filled with rows of purple als shirts.

‘als will be a treatable chronic disease’

in july, dr. angela genge, the executive director of the clinical research unit at the montreal neurological institute at mcgill university talked to healthing about another promising treatment, called amx0035, which has been approved by health canada with conditions — only the third als treatment option available to canadians. she offered patients hope:

it is with profound sadness we announce the passing of our dear woman woman, taya. taya passed away on her own terms with dignity on august 7,2022. she was surrounded by the love of her children, family and best friends. taya is now running in the rainbows. pic.twitter.com/mqh5a2sru1

— taya jones (@tayajones917) august 30, 2022

in her last email to me, she wrote that we were both warriors. no way, taya, you are the warrior. thank you for the legacy of courage, strength and advocacy that you have left. rest in peace.