The Ice Bucket Challenge Actually Worked

[@laurendisney]

My family is plagued by fALS (Familial ALS, AKA ALS triggered by hereditary defective genes). My great-grandfather and grandmother both passed from ALS before the challenge, while my mother passed from it just last month. Because of the challenge and the money it generated, my mother was able to be diagnosed incredibly fast when symptoms first started, by testing for discovered gene defects. She was also able to participate in drug trials that may not have existed if not for the challenge. And, finally, I was able to be tested for the gene defect that my family carries free of charge. I am SO grateful for the challenge and the good it led to, as it directly affected my family in a good way. Hopefully ALS becomes manageable or even curable within my lifetime!

[@Meg_of_all_threads]

I'm sorry for your loss. ❤

[@RonryAsAlways]

This is so haunting to read. I have goosebumps. Here's to a cure

[@lijohnyoutube101]

@@PneumaticFrog Someone with autosomal dominant FALS has one copy of the gene with a mutation and one copy of the gene without a mutation. A child born to someone with FALS has a 50% chance of inheriting the FALS gene mutation and a 50% chance of inheriting the gene without the mutation. This 1 in 2, or 50% chance, comes from the fact that a parent randomly passes on only one member of their gene pair.

[@cayenigma]

AIDS is not hereditary, but I agree it probably will pass on to the child. Sometimes it does not, tho (if you do in vitriol fertilization it will not)@@PneumaticFrog​

[@purpleghost106]

​@@PneumaticFrog Dude, either they already fully know and you're being insensitive. OR they will think about it when it becomes relevant and you're still beind horribly insensitive. Stop. You do not need to tell someone discussing a familial disease that they shouldn't have kids. Also, adoption isn't always an option even for people who would love to go that route--don't talk like kids are just given away to anyone who asks (they shouldn't be anyway) it both dimsisses the hurt of the children in that system, and ignores the hurt of person you're speaking to. Please consider just thinking it to yourself next time this comes up, you mean well I'm sure but you're hurting someone.

[@michaelmayhem350]

Just wanted to point out that ALS doesn't just control voluntary muscles. Most people die once it affects the diaphragm and you suffocate because you can't breathe.

[@johnkeefer8760]

As is also true for many/most neuromuscular degenerative diseases including Muscular Dystrophy (which typically affects Children) as well

[@abydosianchulac2]

In the last stages it can remove the sufferer's ability to blink, voluntarily or involuntarily.

[@playboydojo]

Well that's all terrifying.

[@cristinec9139]

The ALS clinic I used to take my dad to told me the diaphragm is considered a voluntary muscle because you can control it (by holding your breath)

[@harperm1389]

@@cristinec9139 Yes, this. Even though we generally don't have to constantly think about breathing throughout our day-to-day lives, our respiratory muscles *are* still under our control. Versus, say, our hearts, which we cannot choose to stop or start.

[@ritaruuuuuuuuuuuuuuuuuuuuuuuuu]

It makes me happy to hear. Wish we knew more often when and how our contributions to charity actually produced results. Thank you :)

[@DirtyLillNeo]

I genuinely think that if a system to track and show where funds go for research, or even politically, way less money would "dissappear" and faster research due to the former

[@michaelvick2872]

@@DirtyLillNeothere are organizations that track that but I forgot their name. There’s a website that rates charities based on what percentage of their money actually goes to charity, anything less than 65% is considered bad practice, even then it’s like okay what are you wasting almost 40% of your money on?

[@andreafeelsfantastic]

We did it!

[@vic5015]

​@@DirtyLillNeothere are organizations that rate charities based on how much of the $ they raise gets used for charitable purposes and how much goes to salaries and other overhead.

[@tashachantal5711]

It’s sad that we have come to distrust NPOs as a reflex because of dishonesty of entrepreneurs and politicians. I understand the feeling but I think we also use that as an excuse for ego. Seeking validation or recognition for a good deed is ego and it is an easy pattern to slip into. That being said there is a difference between validation and verification, the first we seek due to ego the second we require due to capitalism.

[@ErisFae]

My aunt died from ALS. It was a horrible 18 months between her diagnosis and her slow, agonizing death. Her young children were horribly traumatized. I'm so grateful for breakthroughs that may save other families from that fate.

[@Bildgesmythe]

So sorry

[@doc______]

@@asafoster7954 Antinatalism; when you're too lazy to fix a problem, simply don't try to fix it at all! Edit: BRO DELETED HIS COMMENT

[@Packless1]

my father suffered for 6 years from ALS before he died in 2015 💀 nasty way to go 😱☹

[@joestuff8]

My father made it 15 years living with ALS. He was part of and involved in many experimental procedures. I was 7 when he was diagnosed. Happy I had the time I did with him.

[@Nortarachanges]

He sounds like a hero 💖💖💖

[@Aiden-V2.0]

My dyslexic butt read that as "he was 7 when he was diagnosed" and my brain was working overtime trying to figure out how that math worked😅 Sorry for your loss!🫂

[@wompinoag]

My Mother just passes away from ALS. The ALS Association was an amazing resource for us, and made the whole situation better. It's so amazing to hear that more hope is on the horizon for current and future patients.

[@DudeWhoSaysDeez]

Im so sorry to hear that.

[@abydosianchulac2]

It's been just over 2 months since my mom's death from ALS. All my condolences to you and her loved ones.

[@amalizard]

My sincere condolences to you both. 4 years out from my mom’s ALS death and a week away from what would have been her 71st birthday. May all of our mothers be some of the last to succumb to this horrible disease.

[@y_fam_goeglyd]

I'm so deeply sorry for your loss - and to everyone else who has been through the same thing. It's such a cruel disease. Having seen my own mum mentally wither away due to strokes (though it was worse seeing her obviously understanding everything that was said but unable to speak - for a polyglot and awesome communicator, that was so cruel 😮‍💨), I have a small idea of what you went through. I hope you're all doing well now that she's no longer suffering. Much love to you & yours ❤️

[@abydosianchulac2]

@@y_fam_goeglyd Oh god, I'm sorry she went through that. My mom had to retire as a pastor due to losing her vocabulary to a stroke 16 years ago, so I've some idea of the pain you're talking about. Why does it so often seen to happen to the brightest minds and biggest personalities?

[@sandeesandwich2180]

I drive by Peter Frates Hall at Endicott College every day. I mention this because a Very Interesting detail about the Ice Bucket Challenge is that it was started by one guy -- Pete Frates, who had ALS. This is a case where one person really made a difference. (May his family take comfort from that.)

[@charliespinoza1966]

❤

[@silverscapes9628]

My grandpa passed from ALS in 2015. He lived 8 or 9 years with it, and was a huge driving force for the ice bucket challenge. At the end, he told us all to stop buying him birthday/Christmas presents, and to instead donate to the foundation. I miss him so much, and it’s heartening to know that progress is finally being made, even if it’s tiny. Even if it only buys people a few extra years, it’s so much better than the 1-2 year death sentence most people who get diagnosed with ALS get. My OB/GYN just received this diagnosis a few months ago. This treatment will probably come too late for him, but at least there’s hope.

[@biazacha]

News like this are so welcomed and needed in the current times; reminders of how much humanity can accomplish when we come together rather than attacking each other.

[@glenngriffon8032]

I remember the IBC. I also remember a bunch of people talking about how it was a failure because they didn't see instantaneous, immediate results (conveniently forgetting that scientific research takes time and work). Nice to know it made some real progress happen.

[@TojiFushigoroWasTaken]

100 years ago diseases like this was basically a death sentence....now there is hope for cure....im really proud of us for coming so far

[@inflikktion]

When I was a kid HIV/AIDS was a death sentence. Now an HIV positive person has a slightly higher average life span than a HIV negative person, (presumably because they get regular medical checkups). From certain death to less of a health risk than obesity, all in less than 40 years. Amazing stuff.

[@DudeWhoSaysDeez]

thanks petaaaa

[@abydosianchulac2]

I mean, 100 minutes ago diseases like this were actual death sentences

[@gaeshows1938]

It’s still a death sentence right now

[@mbrusyda9437]

100 years ago?

[@barrylangille3523]

I'd forgotten the ice bucket challenge, although it's hard to forget that my father died of ALS. It's great to hear that there has been progress, and relatively quickly.

[@FoxDragon]

It still just cracks me up how most people that participated in this, technically did it wrong. The challenge wasn't "donate to ALS research and dump ice water on yourself" it was 'donate OR dump ice water on yourself' so going by the actual challenge, everyone who went viral dumping ice water themselves would have been people that didn't donate. And I'm sure plenty of them didn't, although I do hope that big content creators like scishow did both. Patrick Stewart had the best video for it IMO. He just filmed himself writing a check. 😂

[@MargaritaOnTheRox]

Except they also challenged others to do it as well, thus spreading it to more people to donate.

[@katrinschirmer8018]

my husband decided to do both, probably because he wanted to have the fun part of having ice water dumped on him, and also wanted to do good by donating. he also got his friends involved, and they either did both or just donated if they had a reason they couldn't get ice water dumped on them.

[@KhanMann66]

What? Everyone knew what the challenge was stop spreading lies.

[@1One2Three5Eight13]

I remember seeing the challenge being presented as "donate $X or donate $Y and dump the ice water" with Y being much much less than X. But I also heard of people who apparently had missed the message completely and didn't understand that there was a donating portion of the exercise, and just thought that dumping the ice water on themselves would help. So I wouldn't be surprised if all three (donate OR dump, donate AND dump and the two tier version) were circulating.

[@JonMartinYXD]

Writing a cheque _and_ having a drink (not sure what it was) on the rocks.

[@natara658]

I remember donating my birthday money in 2014 in honor of my grandmother who passed due to a very similar condition called MSA (multiple system atrophy). I could only hope we are closer to a cure for ALS almost 10 years later. Blessings to all those who have, are, or will experience this, may your spirit be strong.

[@DebTheDevastator]

What's wild is the thought that ASL research could lead to treatments for MSA or even an understanding in it's cause. It's happened in the past, it could happen again.

[@SuspiciousOwlbear]

My grandmother (in her 80s) was diagnosed with ALS a few years ago and has lived much longer than was expected. It has been really good seeing how much Doctors have been able to do to help her and how much of her life has been able to stay the same despite the disease. She has mostly lost her ability to speak and has needed a feeding tube since she was diagnosed, but she still gets around without assistance (and literally cannot sit still) and has a little tablet she can use that will speak for her (although she prefers to use a whiteboard). I know the ice bucket challenge was a bit of a meme at the time, but for anyone who donated for ALS treatment THANK YOU. You have greatly improved the life of a little Midwestern grandmother and have saved her family much heartache. My grandmother is still alive and hyper today because of the Ice Bucket Challenge.

[@jericho86]

Back when I was in middle school, I had a teacher say, "What are the odds of Lou Gehrig getting Lou Gehrig's disease?" And because I was a raging know-it-all, I corrected him and said that it's obvious that the disease was named after him. That was over 15 years ago, and I'm still embarrassed.

[@dontask7657]

I don't see the problem with your statement, what is it?

[@cayenigma]

Why tho, you were correct. ALS was not named after him, but it's nickname Lou Gehrig's disease was.

[@popejaimie]

​@@dontask7657the teacher knew that and was making a joke that went over op's head, so when they tried to look smart they ended up looking dumb instead

[@kurowkarasu]

​@@popejaimieIdk, I've had teachers say much dumber things with complete sincerity, sometimes you genuinely need to point out obviously wrong statements.

[@sophiedowney1077]

​@@kurowkarasuwhen I was twelve I had to correct my teacher when she was grading tests. I was sitting doing my assignment, and she, an adult with a college degree said, I kid you not, "pfft, a feather doesn't have mass." I had to say, " no, a feather does have mass. It's made of matter and takes up space"(the second half is more for clarity because I figured that if she didn't know that she would probably need help). Then some other kid said, "does light have mass?" I said, "no, light is made of energy and not matter so it doesn't have mass." I hadn't even done that unit yet(we rotated science classes, that's our very underfunded system for ya) and I still understood it better than the teacher. (Tbf she wasn't trained as a science teacher, but still.) Sometimes teachers just don't know stuff.

[@veryberry39]

One of my great uncles had ALS. I was still pretty young, just barely into double digits, and I remember plopping down beside him at an outdoor gathering to say hi. He'd always been one of my favorites, and I remember how difficult it was to understand him. He asked me jokingly if I could understand a word he said, and I lied and said yes. "No you don't," he laughed self-deprecatingly. It was the last time I ever spoke or saw him again, and 30-odd years later, I still wish I'd had the wisdom to know how to speak to him, or to brush it off and act like nothing was wrong. Instead I'd gotten all shy and tongue-tied.

[@emmapalya1682]

He sounded lovely. I'm sorry for your loss and I'm sorry you didn't get more time with him. My mother was self-deprecating as well about her ALS. I think if we hadn't laughed about it often, we would have just been miserable all the time.

[@NukeNukedEarth]

The brother of a classmate back in primary school had ALS and I learnt he passed away last year. Hopefully this new research helps save others like him

[@MissCaraMint]

Oh God. He must have been so young. That’s so sad.

[@NukeNukedEarth]

​@@MissCaraMint I don't the full details, but yeah he was pretty young unfortunately :(

[@Iris_and_or_George]

My favourite IB-challenges were definitely Charley Sheen and Patrick Stewart! The first person that died who I knew really well died from ALS it is fking horrible. Going from an itch on her leg to saying goodbye using a "Hawkings" computer voice within 2 years. 👏🏻👏🏻👏🏻 Well done Internet! You for once didn't make something worse!!

[@shaninnmarie]

My cousin has been in a study for a while to study early onset ALS. He was showing early signs at 16, and crossed the stage at his high school graduation in his wheelchair. Thanks to the funds from his local ice bucket fundraiser, they were able to get the device that lets him communicate with eye movement and they helped to modify their home by widening some doorways and opening up their floorplan and getting some much needed assistive devices. Not only did it help contribute to real progress on a huge scale, but it did a lot of good locally to help raise funds for individuals.

[@hankleybee]

My uncle was diagnosed with ALS this past year. The ALS association has heavily reached out to him regarding treatment and collecting data about its effectiveness, and given him these trackers for his hands and feet to measure how his movements deteriorate on the treatments he's receiving. He says they've got a study group of about 1200 people using these currently, but they're aiming for data samples in the 10,000s.

[@fuzznutt5118]

My mother was diagnosed with ALS in 2014. Lost her in 2018. Wish progress was made sooner.

[@emmapalya1682]

I'm so sorry for your loss. I lost mine to ALS that year as well. It's a cruel disease and hearing about progress is always bittersweet. I hope you're healing from that experience as much as possible now.

[@kirknorman2403]

Thanks for revisiting and updating the information in the long term. 2014 to now, almost 10 yrs!! I wish the regular news would do the same!

[@zbs8334]

My grandmother died of ALS, its one of the most terrible diseases to get. I'm so glad to hear that change is being made. As a fellow lab scientist, I thank all those researchers out there making this work!

[@emmapalya1682]

I'm sorry for your loss. My mother passed from it in 2018. The anniversary of it was just a couple weeks ago. She worked in the medical field and I went into chem and spent some time in pharmaceuticals. She had such an appreciation for the researchers and I'm so grateful anytime I see small bits of progress. Hopefully these findings can make an impact.

[@norikadolmy7274]

This isbwhy basic science is so important. We usually only learn how to prevent a disease when we learn more about the way the body works and the links between certain chemicals or structures. Inspiring

[@Metalhead121396]

i work in biotech, and my coworker actually discussed this paper in journal club today! awesome stuff

[@RachelsSweetie]

That long ago? I did the challenge even though I have a competing neurological disease. Nice to hear it helped!

[@SeptemberMeadows]

Our former sheriff, who was also a former Marine, was told he had ALS and that he would probably only have up to 5 years to live. He told me that former military members have something like 20 or 25% more of a chance of developing ALS. He only lived about about a year after being told he had ALS.

[@cayenigma]

Really? That is interesting. ALS is a hereditary condition, but military service also 'runs in the family'. I am wondering if those same genes make you patriotic.

[@SeptemberMeadows]

@@cayenigma Exposure to pesticides (including Agent Orange) certain chemicals (exhaust, burning agents), heavy metals, and head trauma appeared to increase the risk of ALS among military personnel. Conclusions There is a possible association between military service and the subsequent development of ALS; however, the evidence was limited. Studies were generally hindered by small sample sizes and inadequate follow‐up time. Future studies should endeavor to objectively measure specific exposures, or combinations thereof, associated with military service, as this will be of vital importance in implementing preventative strategies into military organizations.

[@sophiedowney1077]

I wonder if it's related to the burn pits. There's at least one lawsuit from military members who got cancer and stuff like that after being exposed to burn pits.

[@SeptemberMeadows]

@@sophiedowney1077 I'm certain we'll figure it out eventually but also certain that the government is in no rush to come to a conclusion that will cost them any money.

[@cayenigma]

Yeah that is true@@SeptemberMeadows

[@numinous2506]

Billionaires could do this for every disease without breaking a sweat.

[@Tinyvalkyrie410]

I’m not sure you understand how expensive medical research is or how many diseases are out there. Billionaires are a bad thing, I fully agree, but unfortunately medical research and it’s failures are a way more complex issue than “rich people could fix it.”

[@user-Aaron-]

​@@Tinyvalkyrie410Simply having reasonable profit margins and salaries would go a long way though.

[@Tinyvalkyrie410]

@@user-Aaron- sure absolutely, but most individual drugs take billions of dollars to bring to market (the Covid vaccine cost something like 30 billion if I remember correctly, and it’s far from a cure), and there are SO many diseases. Even if all the billionaires donated all their money, it wouldn’t be enough. For example, the single large influx of cash the ice bucket challenge raised hasn’t actually been that successful, and the govt provides way more money for ALS research than the campaign did. This is a huge problem, and I feel like suggesting one weirdly charitable billionaire could fix it vastly underestimates the problem, as well as allowing us to make medical research “someone else’s problem” when it needs to be “everyone’s problem.” Edit: the US (private and govt) spends what looks like 300 to 600 billion dollars on medical research each year, and there are approximately 700 billionaires, most of which only have 1 billion, so if they doubled the spending of this country, they would be tapped out in 1 to 2 years. That’s what I mean by underestimating the scale of the issue.

[@chaoswraith]

Thats unfortunately not how it works though, its not linear. Sure, you can hire 5 contractors at once to speed your bathroom up, but after a certain point, having 1,000 contractors working on it doesn't help things go any faster

[@purpleghost106]

@@chaoswraith Yeah, but not having funding to hire the contractors in the first place means the bathroom never gets any fixing. They didn't say anything about speed. They said billionaires could do this. They could, in fact. They could fund this and house and a million other things. The research is incredibly expensive, but billionaires do not *need* their wealth as it is.

[@burger_boy4587]

ALS took my father and I always was split on if the ice bucket challenge was doing anything or not but it makes me happy to know it did

[@MeepS]

It makes me so happy to hear this, RIP Dogbomb we miss you so much but i'm so glad all the money raised is going to helping future ALS patients and I hope they can find a way to help such a horrible disease

[@YourWealthCome]

The one thing that gets me is I asked many people who did this challenge to tell me what ALS meant and what it was; Not one person could. But I'm so grateful it payed off.

[@user-Aaron-]

People in a nutshell.

[@raccoontrashpanda1467]

Considering how little doctors knew about what ALS is how it effects the body before the challenge raised so much money and years of research were possible due to that, its hardly surprising that when the challenge happened most people couldn't say more about it than a painful and deadly genetic condition.

[@caspermadlener4191]

Money to research leads to advancements in medicine? Who could have thought!?

[@chibi_bb9642]

we're gonna need a LOT more harmless viral charity-challenges

[@ambiguoustvreference835]

​@@chibi_bb9642and blank govt checks for research

[@KhanMann66]

Yeah let’s forget the greedy middleman stealing all our money donated.

[@troybaxter]

The problem is that we throw billions at cancer research too, and so far we don't have any definitive cures outside of chemo. Just throwing money at a disease doesn't mean the problem will be solved. It's also about the complexity of the disease too.

[@Rainlitnight]

My mentor in the Sleep Tech field died of ALS a few years ago. I knew early on when he had been diagnosed, but I only caught word he died a year after it happened (and a few years after diagnosis) because I saw an email from the national board about a scholarship in his name. He was an incredible man and an amazing mentor and believed in every single one of his students til his dying breath. Funnily enough, I did the challenge my first year of college, and I knew around the time he was diagnosed that the fundraising actually worked. But it was too late for my mentor. He was going to Mexico for cheaper treatments, and had 2 young daughters. I found his wife's contact and called her and just sobbed with her-- a YEAR later-- to just Be with someone who knew his soul and to grieve together. It was extremely cathartic. She asked me to help her pick the kid that would get the scholarship in his name. Of course. Of course. Of course. Rest in Power Jomo.

[@emmapalya1682]

I'm so sorry for your loss. My mother passed from ALS in 2018. I'm glad you were able to share your grief with his wife. I'm sure it was cathartic for her as well. He must have been a wonderful mentor to have left such a strong impact. I'm glad you were able to be involved with the scholarship process. I hope both you and his family have been healing as much as possible.

[@Rainlitnight]

@@emmapalya1682 I'm so sorry for your loss as well. At least he wasn't family; I can't imagine losing my mom that way. I hope you have people to grieve and share your mother's memory with too.

[@glossaria2]

This is AWESOME. Thank you so much for checking in on this!!

[@gabbyslife1394]

We did the ice bucket challenge in middle school to support a teacher we had that had ALS. All the students were super excited, we all donated a couple dollars for the project.

[@y_fam_goeglyd]

This is fantastic news! Any breakthroughs in understanding and hopefully treating this cruel disease is to be welcomed. For those who got soaked, the humiliation was absolutely worthwhile! Thank you for doing it.

[@ParallelPenguins]

Good news about research into the disease that took my Grandma on the 29th anniversary of her death has sure made the day a whole lot better! Thank you!!

[@j.lahtinen7525]

As someone who's dad died of ALS, this warms my heart. Any advance in understanding this horrid disease is welcome, ESPECIALLY if it comes with potential treatments.

[@rebelroar78]

Research into one disease often leads to breakthroughs in other diseases. Like insights about HIV have led to new cancer treatments, and an abandoned arthritis drug is showing promise as a treatment for some dementias. It wouldn’t surprise me if a treatment for ALS opens up treatments for Alzheimer’s, MS, spinal muscular atrophy. Or Parkinson’s. This kind of research also increases the chances of an accidental discovery being made for something completely different, like how finasteride was developed for BPH but ended up being an effective treatment for male pattern baldness.

[@SuperKavv]

It's wild that I was just thinking of my grandmother who died of ALS a few years back literally 2 hours ago. It makes me very happy to know that we're closer to solving it.

[@emmapalya1682]

I'm so sorry for your loss. I lost my mother to ALS in 2018. The anniversary of her death was just a couple weeks ago. I hope these findings can make an impact. I've seen so many things in the past few years even on the technology side that can improve quality of life for those affected.

[@NotAMartian-1]

My grandma passed from ALS in 2005, I was 10 at the time. It’s a horrible way to go, I don’t remember her voice she had lost it by the time I was old enough to form memories. I remember making bread with her but that was short lived, eventually she was wheelchair bound using a computer to talk, then even that stopped.. she was trapped in her body. Hearing that there has been some breakthrough, even just a small one is huge. It brings me to tears in hopes that sometime in the future people won’t have to go through what my grandma and my family had to go through.

[@abydosianchulac2]

This video stings a bit so close to my mom's death after only 16 months' deterioration from ALS, but any hope we can find against this f-ed up disease is welcome.

[@misspat7555]

Condolences on your loss. Grief sucks. 😞❤️‍🩹

[@AnExPor]

Nice to hear that there is something good coming of the money raised. Especially after watching all the IBC injury videos.

[@rejiinamio]

I'm happy to hear news like this, I still remember the challenge all over my youtube feed

[@victoriabarclay3556]

It was an amazing viral moment that so many people participated in for the fun of it. No one could have predicted or forced it to happen.

[@amalizard]

I watched my mom die from ALS. It’s a horrible disease I wouldn’t wish on my worst enemy. Any treatment is better than no treatment. Always happy to hear when progress is being made.

[@ThomasShaneHynes]

As someone who is awaiting results for an als diagnosis at 31 years old this is reassuring news. It is completely messed up to be told you are likely going to die within a few years i wouldn't wish it on anyone.

[@RandomCronch]

I did the ice bucket challenge in 2014, and I actually had no clue what it was for until now, great to hear it worked!

[@bookworm3005]

My ice bucket challenge video popped up on my Facebook memories just last week! I was a senior in high school and did the ice bucket challenge with my then-boyfriend (now husband). At the time, I was really excited about doing my part to help out, though now I would be a lot more skeptical about something like that being legit. I'm so glad something actually came from it!

[@katbairwell]

We lost my husband's Mum to a more aggressive variant of Motor Neurone Disease, in late 2019, just six weeks from diagnosis to death. Anything that brings researchers a step further in the understanding, and potential treatment of, these diseases is good news indeed! With gratitude to everyone who got dunked, it is wonderful to see how a global community can come together, and have that unity produce real results.

[@RadGirl35]

My Grandpa died from ALS when I was 6 but I still remember him being unable to keep food down at the end of his life. Have also seen videos of him having trouble speaking and doing certain movements. I know it was very hard on him because he was always using/ making things his hands. He was officially diagnosed two days before he died. (This was 20+ years ago). Since then two other people I know have been diagnosed with ALS with one being a recent diagnosis. I also did a presentation about ALS in high school to honor of my grandpa. I also participated in the ice bucket challenge (twice), but I the challenge occurred while I was a senior in high school/a new college student so although I wanted to donate I didn’t know/ have the means to do so. But proud of those who did and happy this challenge helped advance research into this horrible disease.

[@OrabitsMadness]

Australia does a yearly event called The Big Freeze since the ice bucket challenge started. We are sending sportsman and celebs down a waterslide in funny costumes into a pool for of water and ice in the middle of winter.

[@dwightalexander2648]

My mom died back 2019 to a similar degenerative disease, i'm just glad we're now making progress to finding cure to these kind of illness... i don't want anyone, not even on my enemies to suffer what my mom suffered 5 years slowly getting tortured before passing.

[@eternal8song]

My paternal grandfather died of ALS in 2011, and it ran in his side of the family, so I’m genuinely thrilled to see this. I hope it never affects my dad, but if it does, I’m glad that they’ve made breakthroughs. I remember doing this challenge with my sister

[@jaedinalways1535]

"...Welcome to what the internet did for fun in 2014." *Me visibly aging on the spot.*

[@terranaut]

SciShow constantly delivers quality content. I learn so much from you. Thank you!

[@TheAureliac]

Savannah Geary is one of the most self-assured SciShow presenters. Her humor is seemingly effortless and thankfully she doesn't stop and punch every joke. Her voice and phrasing are unstudied and spot-on. She's quite an addition to your lineup.

[@tracylee4442]

This is fantastic! Thanks for following up on this story

[@killman369547]

I'm glad to hear that it actually helped the cause it was meant to. Can be tricky these days knowing which charity to donate to, which ones are going to do the right thing with the money vs being a front for some corrupt politician to line their pockets.

[@andreafeelsfantastic]

There are sites to help you figure out what charities do the most good per dollar. Google effective altruism and givewell :)

[@kinasakuraba]

Wait there was money involved with the ice bucket challenge? I thought the whole thing was about awareness. But then nobody I remember watching talked about what it was so it just felt like it was the thing to do to stay popular. Glad it was more than that and it's making a difference.

[@nerdyrevelries422]

If someone challenged you, you were supposed to either write a check or do the challenge. Some people did both, some people just wrote a check. Patrick Stewart, for example, wrote a check and put some ice in his drink.

[@troybaxter]

​@@nerdyrevelries422 I think most people did both.

[@Stammer6]

We lost my cousin to ALS this year. It was one of the most awful things I've ever seen. It's great we're making some breakthroughs, and this video has a lot of hopeful news.

[@lousielouise8716]

This is awesome. The fact that all this was accomplished with just over 100M in research dollars makes me wonder how much more could be done with proper, reliable funding.

[@randall.chamberlain]

What a fantastic contagious enthusiasm emanating from this nice lady!

[@supercoolkid07]

Having lost my aunt to ALS in her 30s was quite traumatic to witness. Glad the ice bucket challenge is paying off

[@bloodfiredrake7259]

We stand on the shoulders of giants, each generation adding to the sea of human knowledge. One drop at a time.

[@Inktron]

I remember doing this challenge! I’m glad it had a real impact, it shows the power of what the internet can do!

[@robertgehrig1631]

Amazing info to hear that progress is happening.

[@wasababi]

My twin uncles both got diagnosed with ALS, one uncle has progressed way farther then the other. My dad thinks its from when they worked on a farm and sometimes got doused in pesticides from planes in the 1960s. My father never did, and the twin uncles kinda remember it. Like genetics could be playing a major role too on why my father has no signs either.

[@DarshanShah10]

Is this wizardry or what? I was JUST thinking about this, and whoa! I see this video

[@broklond]

There's a lawyer here in Hungary who suffers from ALS and is fighting the state in court for his right to decide when he wants to end his life. If there's no treatment for the syndrome at least give them the possibility to leave how they want to.

[@Accountnolongerexists]

Streaming or buying Lucy in the day with diamonds will donate to als also. The girl the drawing that inspired the song had it and Julian bought the rights to donate to them.

[@PRDreams]

Just wanted to point out that those that chose to have an ice water bucket thrown at them did not donate... unless they were famous. The challenge was you either donate money OR get an ice water bucket shower and be filmed. I donated.

[@katherinegarlock2249]

For all you unsure, this is the same disease in "Tuesdays with Morrie" that you likely had to read in high school.

[@gufu21]

It's kind of amazing that we can make significant progress against a terrible disease for about $100 million-which isn't really a huge amount in US budgetary terms. Meaning, we could probably be curing diseases, including cancer, if we rich nations just wanted it enough.

[@johnsober]

Cancer is a group of diseases and even the diagnoses within the same sub-group of cancers can be very different from each other. Specific cancers may have cures one day (more realistically their treatments will just have very high efficacy rates) but cancer as a whole is likely never going to be cured.

[@Maplefrostu]

I work in biomedical research, it is incredibly frustrating how underfunded everything is.

[@steggopotamus]

And if BILLIONAIRES want it bad enough. I'm so mad at corporations and billionaires we'll hear something about how terrible something they produce is for health. Lile microplastics, or PFOAs and you know that the c-suites and Billionaires are also consuming these things... But they're just so money focused that rather than do research they'd rather please investors. It's maddening because they're hurting themselves, in direct ways, let alone not understanding the round about ways health research could circle back and help them. Like ALS research could have implications for other neurological disorders, but they don't invest in the future. Ugh. /Rant

[@jonathansallows836]

It's so rare that something somebody's parent or grandparent thought would be "a cool idea" is curing a deadly, global disease.

[@amandagreen4332]

I lost my father to late-onset ALS, related to his lengthy service in the military. The FDA drug trial and approval process takes too long; many ALS sufferers simply do not live long enough to participate in standard trials. The FDA needs to fast-track approval for any meaningful advances.

[@scatterbrain_jane]

Funding and research is importing ❤ thanks to all in these fields for their hard work!

[@kittimcconnell2633]

A friend and I both did the ice bucket challenge! The videos are still on my YT channel, Lillie's got over 100 views. So glad to hear the research benefits, all these years later!

[@emcat52]

A family friend I was really close to died of ALS in 2015. This means a lot

[@kitefan1]

I'm glad the research is going well. Everytime I think of the challenge I also think of a fire truck crew that were electrocuted, resulting in the death of Capt. Tony Grider, in Kentucky while helping the Campbellsville University band with their Ice Bucket video. A number of other people were injured at other times and places. People, unfortunately are always going to be people.

[@Deathnotefan97]

Honestly surprised by this I remember the ice bucket challenge getting to a point where people quickly forgot the purpose and just started doing the challenge for the sake of it, with no mention of the charity or continuing to raise money for it

[@cindygr8ce]

My father died in Dec 2020 from ALS after fighting for 6 years. I have never seen a more horrible disease not cancer, dementia, etc. Breaks my heart it's too late for my father but since I have a son(it's almost always men who suffer from als) and for those who have a chance to maybe benefit from this research this is great news. It's an awful disease.

[@Solarpunk_SciFi]

I was on the internet in 2014, but I was too busy watching Minecraft videos. And now, years later, all grown up, I was wondering if this video was gonna be about making obsidian. :D I have no regrets.

[@toomanyopinions8353]

Really glad to hear this!!

[@20yearsofsnowfalling]

maybe ive been gone a while and they arent new but i love this new host!

[@GlobalWorkings]

We need to have an ice bucket challenge round 2

[@shaynecarter-murray3127]

A good example of a single disease with many contributing factors is hemophilia. There are several different "switches" in the "circuit" (i dont know the medical terms) for clotting, and if any one of those "switches" is bad, clotting fails.

[@paulrector3299]

Excellent episode

[@LegoDan2002]

Genuinely the best news I've heard in a month :)

[@minigolfkid]

step-grandma lived with it for maybe forty years? it was a slow death, that thankfully my grandfather was able to support her through. This is great news for her bio family! 🎉 I can’t believe this!

[@A-Duck]

My dad died of MS when I was 10, which is very similar to ALS. These kinds of diseases scare me and I'll be glad when they're a solved problem. Nobody should go through that.

[@beneteus3833]

its already 10 years back, damn

[@sisyphyus]

Patrick Stewart's Ice Bucket Challenge was the best ever! LOL

[@jliller]

I missed that in 2014, but just watched it. Good stuff.

[@papa_woody]

I used to work with a guy who is diagnosed with ALS, he is almost completely paralyzed now.

[@VeryNerdyPerson]

I was honestly expecting to hear about the advantages of dumping ice on your head... But this is cool too!

[@DawnDavidson]

😂

[@MuscarV2]

I randomly remembered the ice bucket challenge as I was falling asleep last night, and now this shows up right after I wake up.

[@MissBlueEyeliner]

This gives me so much hope that there’s going to be a treatment found for M.E in the future. If you feel overwhelmed by your incurable and untreatable disease, remember how amazing science is and how far it has come in our own lifetimes. AIDS is now being cured!🤯

[@samuela-aegisdottir]

When I was a child I knew that getting AIDS is a death sentence. Now we have medicine that can supress the virus not to do any harm any more. We also have vaccines for ebola and malaria. I just hope we will also get a treatment for Alzheimers, that is also a terrible desease and it is the one I have in the family, which terrifies me. It was so painful to see it slowly destroying my granmother. It is a desease that kills what is human in you and leaves an empty shell of your slowly dying body.

[@matir1225]

If NEK1 is a gene that codes for certain proteins, shouldn't we try to replicate those proteins and track their interaction with the cells in order to understand whether someone that can't properly produce it can receive it from a treatment?

[@theamericane2655]

The internet should do the Ice bucket challenge again