Remember the Ice Bucket Challenge? Funds raised are helping researchers better understand ALS

Around this time last year, the Ice Bucket Challenge was all the buzz.

People were dumping buckets of ice cold water on themselves in the name of raising awareness and research funding for amyotrophic lateral sclerosis, better known as ALS. Videos went viral, and our social media feeds were all about it.

According to the ALS Associaton, more than 17 million Ice Bucket Challenge videos were posted to Facebook last year and about $220 million was raised.

ALS, also referred to as Lou Gehrig’s disease, destroys motor nerve cells in the brain and spinal cord, causing progressive paralysis and death.

It is estimated that about 5,600 people in the U.S. are diagnosed with ALS each year. The average patient lives from two to five years after their diagnosis. But very little is known about the disease. Hence the need for research funding.

Never had I seen a fundraiser trend on social media like the Ice Bucket Challenge did. It was new and refreshing, literally.

And just a year later, we are seeing results from the popular ALS campaign.

Scientists at John Hopkins University announced a new breakthrough in ALS research, partly crediting the interest and funds raised by the Ice Bucket Challenge.

Jonathan Ling, an ALS researcher, said in a Reddit thread that scientists have moved forward in understanding the function of a protein called TDP-43.

In the brains of ALS patients, Ling explained, cells get sick because TDP-43 becomes “sticky” and “clumps together” outside the nucleus, where it can’t do its job of decoding DNA, causing the cell to die.

Scientists have known about the protein for about a decade, but never quite understood its role, he continued.

The researchers now know that if they can mimic the protein’s function, Ling said, there’s good chance that the disease’s progression can be slowed.

“All of your donations have been amazingly helpful and we have been working tirelessly to find a cure,” Ling said in the Reddit post. “With the amount of money that the Ice Bucket Challenge raised, I feel that there’s a lot of hope and optimism now for real, meaningful therapies.”

Last year, the Sun-Star spoke to Merced County families who had been affected by ALS. Their thoughts on the Ice Bucket Challenge were ones of gratitude. Not because they thought it could benefit their loved ones (they understood a cure could take years), but because of the awareness it was creating about a disease that not very many had heard of prior to the fundraising campaign.

Some who had lost a spouse to the disease recalled not knowing very much about ALS before the diagnosis. They were thankful that interest was building and that others may get the answers they never had.

Merced groups and businesses took part in the challenge, putting on events that raised up to $5,000 in some occasions.

The ALS Association launched the campaign again this August. Its website states that it will do so every August until there is a cure.

As we await more updates on this research, I think we can all take a lesson from this: Social media and people’s goodwill, together, can have tremendous positive influence.

This story was originally published August 21, 2015 at 3:15 PM with the headline "Remember the Ice Bucket Challenge? Funds raised are helping researchers better understand ALS."