PORTLAND, Ore. — The ALS Ice Bucket Challenge wasn’t just a viral phenomenon but prompted millions to support people living with the nervous system disease, with many living with ALS sharing on how clicks and likes have transformed medical advances.
“I am one of the lucky ones because I am standing here, talking to you, and able to move and talk and all of those things that we dread losing,” said Vivian Cykman-Garner, diagnosed with ALS four years ago.
The disease progressively attacks the nervous system, leading to a loss of motor skills, muscle weakness and atrophy.
“The only real issue so far has been my arms, which are very atrophied. It’s hard to look at them now because they used to be so muscular. But, you know, you have to decide where you’re going to focus,” Cykman-Garner said.
Now, she’s focusing on the good news. She joined ALS Northwest at Willamette Park on Saturday to take pride in the medical strides made over the past 10 years since the viral ALS Ice Bucket Challenge.
“The Ice Bucket Challenge 10 years ago raised a lot of money for awareness, for research, for a cure,” Cykman-Garner said.
Cassy Adams from ALS Northwest helped organize the celebration this Saturday afternoon. Adams said the Ice Bucket Challenge made people realize how common the diagnosis is, in addition to raising millions.
“It really brought not just awareness but also an increase in the critical care that’s needed. It helped fund the multidisciplinary ALS centers all across the United States, which folks with ALS can access to get the care they need from specialists who really understand the disease,” Adams explained.
Right now, there is no cure for ALS, but advocates like Adams are hoping this will change.
“But until then, we’re going to continue to advocate, continue to raise funds and awareness, and continue to support people living with that diagnosis right now,” Adams said.