It’s been ten years since the viral ALS 'Ice Bucket Challenge' — a global social media effort to raise funds and awareness about the disease by dumping a bucket of ice cold water on your head and sharing it with your followers.
ABC 10News sat down with several members of ALS San Diego who are working to bring back the trend on its 10th anniverary.
"When you get this diagnosis, your head kind of spins…it's always terminal,” said Jackson Strong.
It was 2019 when Jackson’s father John was suddenly diagnosed with ALS.
"He was having some trouble dealing with it…just grasping what was going on,” he said.
Jackson says during that time his dad adopted a motto: "He saw a poster that said 'We Got Now' and that's how he decided to live his life until the end. We have this present moment and we're going to take full advantage of it.”
John Strong passed just two years after his diagnosis.
Today, Jackson lives by his dad's words. He works as a community engagement manager with ALS San Diego alongside Brandy Wiegand, the non-profit’s executive director.
"The ice bucket challenge was really a cultural phenomenon,” said Wiegand.
Wiegand says they're hoping to recreate that viral moment in history 10 years later — along with its results.
The ice bucket challenge was started by three young men living with ALS and inspired 17 million people across 159 countries to participate. It raised more than 200 million dollars globally for ALS research and care. While the disease still has no cure, since then, the FDA has approved two additional treatment options for ALS: Radicava in 2017 and Qalsody in 2023. The latter was developed by a pharmaceutical company in Carlsbad.
"Majority of the ice bucket money was invested in clinical research trials,” explained Keith Miller, Director of Care Services, ALS San Diego.
Miller works directly with families living with ALS here in San Diego, offering them help every step of the way.
"This disease is a monster. It affects the family. No reason not to get help,” said Miller.
The ALS San Diego team encouraged 10News viewers at home to help them in their mission by posting new ice bucket challenge videos in honor of the 10 year anniversary. If you’d like to donate to the cause you can learn more online.
"We know that the average lifespan of someone who is diagnosed is 2 to 5 years. We would love to see that doubled and tripled with the efforts that we're doing now,” added Wiegand.
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