1 year later, the Ice Bucket Challenge funds this breakthrough in ALS research.
Money raised by the viral campaign is making a big difference.
Remember the Ice Bucket Challenge?
Of course you do. It was that viral video campaign that took off last summer where you'd log into Facebook and see a steady stream of your friends dumping water on themselves in the name of awareness and research for the ALS Association.
For science! Brrrrrr. Photo by Clive Mason/Getty Images.
Some brushed the movement off as an example of "slacktivism," but it actually helped raise more than $100 million. When you compare it to the $2.8 million raised by the organization during the same period a year earlier, it's clear that the Ice Bucket challenge paid off.
ALS, also known as amyotrophic laterals sclerosis or Lou Gehrig's Disease, affects an estimated 30,000 living people at any given time.
It's a disorder that affects nerve and muscle function. Just 20% of those with the disease will live more than five years following diagnosis. It's brutal.
But there's good news — due, in part, to the money raised by the Ice Bucket Challenge.
While that man doesn't seem to be having such a great time, I really need to find out what kind of seemingly IBC-proof makeup the woman on the left is using. Photo by Scott Barbour/Getty Images.
During a reddit "Ask Me Anything" session, ALS researcher Jonathan Ling unveiled a major breakthrough in his work.
Ling wanted to do an "Ask Me Anything" to debunk some of the negative things being said by skeptics about the success of the Ice Bucket Challenge.
"I mainly wanted to do this ["Ask Me Anything"] because I remember reading a lot of stories about people complaining that the ice bucket challenge was a waste and that scientists weren't using the money to do research, etc. I assure you that this is absolutely false," Ling writes.
"All of your donations have been amazingly helpful and we have been working tirelessly to find a cure. 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."
So what's the big breakthrough? Well, it has to do with protein — or rather, one specific protein.
Ling's research focuses on TDP-43, a protein in cells that's he's been able to link to ALS.
Ling breaks down the purpose of TDP-43 with an analogy involving a library that's easy for us non-scientist types to understand:
"DNA is located in the nucleus of a cell. You can think of a nucleus as a library except that instead of having books neatly lined up on shelves, the books in a nucleus have all of their pages ripped out and thrown around randomly.
To sort through this mess, the cell has great librarians that go around collecting all these pages, collating them and neatly binding them together as books. These librarians then ship these 'books' out of the nucleus so that other workers in the cell can do their jobs. Think of these books as instruction manuals.
TDP-43 is a very special type of librarian. TDP-43's job is to ensure that nucleus librarians don't accidentally make a mistake and put a random nonsense page (usually filled with gibberish) into the books that they ship out. If one of these nonsense pages makes it into an 'instruction manual,' the workers in the cell get really confused and mess things up. For terminology, we call these nonsense pages 'cryptic exons.'"
His team found that in 97% of ALS cases, TDP-43 wasn't doing its job. And now that they know this, they've been able to begin work on new therapies to do TDP-43's job for it. If successful, he believes this can slow down the progression of the disease.
How cool is that?
Baseball Hall-of-Famer Lou Gehrig became the face of ALS after he tearfully retired from baseball upon diagnosis. Photo by Hulton Archive/Getty Images.
But what about the other 3%? Well, we don't have all the answers just yet.
One redditor asked that question, and essentially, it boils down to the fact that ALS is still pretty unpredictable. While TDP-43 may play a large part in the disease's progression, it's not the whole picture. For those individuals for whom ALS runs in the family, that seems to be linked to a gene called SOD1, and not TDP-43.
That's why research needs to continue.
"When you look at ALS from a genetics perspective, about 10% of the cases are called 'familial', [that is], lots of people in the family have ALS and it seems to be passed down. The other 90% of ALS appears to occur completely by unfortunate chance and we call that 'sporadic.'
As researchers, we look to the genetics for clues to study the disease. One of the first family-linked genes discovered was a gene called SOD1 that is found in about 30% of familial cases. But it's starting to seem like SOD1 is an outlier because TDP-43 doesn't seem to be messed up. Instead, SOD1 seems to clump together due to the mutation. We get the 3% because 30% of 10% familial is 3%." — Ling
But yeah, this is pretty neat, exciting stuff!
Ling hopes to have therapies based on his research making their way to clinical trials within the next two-three years.
And from there, who knows? Maybe this is the breakthrough that sets up the next big step in finding a cure for this absolutely ruthless disorder. 76 years after it first entered the public consciousness with Lou Gehrig's emotional farewell speech, a cure feels closer than ever before.
Last year, we shared a video by Anthony Carbajal, a man who had been recently diagnosed with ALS.
ALS runs in Carbajal's family. His grandmother, his mother, and he have all been diagnosed with the disorder. His Ice Bucket Challenge video was powerful because it put a face to the research and the desperation for a cure.
GIF via Anthony Carbajal.
The research made possible by the Ice Bucket Challenge gives hope to people like Anthony. It's just so important.
Saying that 30,000 people live with ALS doesn't mean a whole lot until you see the pain it causes those living with it and watching their loved ones do battle. When you watch Anthony's video, his tears welling up in his eyes, it's clear just how much the world needed something like the Ice Bucket Challenge to fund the research we need to put an end to ALS once and for all.
There's a reason why some people can perfectly copy accents, and others can't
Turns out, there's a neurodivergent link.
A woman in black long sleeve shirt stands in front of mirror.
Have you ever had that friend who goes on vacation for four days to London and comes back with a full-on Queen's English posh accent? "Oooh I left my brolly in the loo," they say, and you respond, "But you're from Colorado!" Well, there are reasons they (and many of us) do that, and usually it's on a pretty subconscious level.
It's called "accent mirroring," and it's actually quite common with people who are neurodivergent, particularly those with ADHD (Attention Deficit Hyperactivity Disorder). According Neurolaunch, the self-described "Free Mental Health Library," "Accent mirroring, also known as accent adaptation or phonetic convergence, is the tendency to unconsciously adopt the accent or speech patterns of those around us. This linguistic chameleon effect is not unique to individuals with ADHD, but it appears to be more pronounced and frequent in this population."
Essentially, when people have conversations, we're constantly "scanning" for information—not just the words we're absorbing, but the inflection and tone. "When we hear an accent, our brains automatically analyze and categorize the phonetic features, prosody, and intonation patterns," writes Neurolaunch. For most, this does result in copying the accent of the person with whom we're speaking. But those with ADHD might be more sensitive to auditory cues. This, "coupled with a reduced ability to filter out or inhibit the impulse to mimic…could potentially explain the increased tendency for accent mirroring."
While the article explains further research is needed, they distinctly state that, "Accent mirroring in individuals with ADHD often manifests as an unconscious mimicry of accents in social situations. This can range from subtle shifts in pronunciation to more noticeable changes in intonation and speech rhythm. For example, a person with ADHD might find themselves unconsciously adopting a Southern drawl when conversing with someone from Texas, even if they’ve never lived in the South themselves."
People are having their say online. On the subreddit r/ADHDWomen, a thread began: "Taking on accents is an ADHD thing?" The OP shares, "My whole life, I've picked up accents. I, myself, never noticed, but everyone around me would be like, 'Why are you talking like that??' It could be after I watched a show or movie with an accent or after I've traveled somewhere with a different accent than my 'normal.'
They continue, "Apparently, I pick it up fast, but it fades out slowly. Today... I'm scrolling Instagram, I watch a reel from a comedian couple (Darcy and Jeremy. IYKYK) about how Darcy (ADHD) picks up accents everywhere they go. It's called ADHD Mirroring??? And it's another way of masking."
(The OP is referring to Darcy Michaels and his husband Jeremy Baer, who are both touring comedians based in Canada.)
Hundreds of people on the Reddit thread alone seem to relate. One comments, "Omfg I've done this my whole life; I'll even pick up on the pauses/spaces when I'm talking to someone who is ESL—but English is my first language lol."
Sometimes, it can be a real issue for those around the chameleon. "I accidentally mimicked a waitress's weird laugh one time. As soon as she was out of earshot, my family started to reprimand me, but I was already like 'oh my god I don’t know why I did that, I feel so bad.'"
Many commenters on TikTok were shocked to find out this can be a sign of ADHD. One jokes, "Omg, yes, at a store the cashier was talking to me and she was French. She's like 'Oh are you French too? No, I'm not lol. I'm very east coast Canada."
And some people just embrace it and make it work for them. "I mirror their words or phrase! I’m 30. I realized I start calling everyone sweetie cause my manager does & I work at coffee shop."