Die Trying - The Battle For ALS Treatment (VICE on HBO: Season 4, Episode 16)
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- čas přidán 27. 05. 2024
- The 2014 Ice Bucket Challenge raised millions of dollars for ALS, a fatal neurodegenerative disease. While the social media wave gave new life to ALS research, there is still no viable treatment, and access to experimental drugs is limited. Battling ALS herself, VICE editor Angelina Fanous meets with patients and top researchers across the U.S. to find out what's being done to tackle this devastating disease and the regulatory hurdles faced by ALS patients and drugmakers alike.
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"They're protecting me to death" that's gotta be the most depressing thing I've ever heard of.
You are more certainly right about that! I could imagine going through that experience and I see that a lot with special students in my school (not all my schools) and not that I am a special student.
They are "protecting" ALL of us to death, especially the chronically ill
Sorry to say but this disease is not cureable ... dont live with false hope. Just start prepare for the end of life. Fulfil all your dream . Complete all your conversation because one day your heart cries hopelessly when you see your daughter on the ventilator that she cannot talk or write and you found yourself giving false hope to your daughter that its only a chest infection and you will be good in some days ..... Just like I gave hope to my mom. 😔
Rich Homie Quan Chi while also one of the most accurate
Welcome to the USA. I have lost 2 friends to ALS and I'm losing another one. She asked me how to breathe yesterday and it broke my heart
She is the strongest girl ever, seeing her fate directly in front of her and still pushing through to report on it
they spent money on synthetic drugs when they know cannabis works... fuck sakes WAKE UP PEOPLE
in a way, this is how she is fighting for survival. she's raising awareness to ALS, getting people to talk about it, which will increase funding and find a cure faster.
That is very true
I could never be as brave as her!
@@JustinP ? going to need some details, some data, some explanation of why you think weed is going to stop the ALS process.
Does anyone still doubt natural herbs? I have seen the great importance of natural herbs and the wonderful work they have done in people's lives. I wonder why people still spend their money on surgeries, injections, and medications every time they get sick. Natural herbs can cure all kinds of diseases, including, prostatitis, herpes, als diabetics, asthma, cancer, hepatitis, etc. I have seen it with my own eyes. I was cured of irritable bowel syndrome and my sister and her husband were cured of herpes by Hopkins who uses natural herbs to cure different types of illnesses. Even Hopkins proved to the whole world that natural herbs can cure all diseases and he healed countless people using natural herbs. I know it's hard to believe, but I am a living testimony. There is nothing wrong with trying herbs. Contact Dr. (email). dr.hopkinsherbalcure00@gmail.com Come and thank me later ✌️✌️
..
"I didn't want just a boring old chair" That's the words of someone who is drowning in fear. Someone who knows that she'll eventually lose. But also someone who is strong enough to laugh and keep standing until the bitter end. I hope she never reaches that bitter end. I hope that a cure reaches you in time. Cheers to you.
You're comment has me in tears... I feel so bad for these people.
So true. I feel for Beth and hope she's around for a long time. She has a beautiful smile that makes you want to smile and she seems upbeat and positive despite knowing what's down the road. She's gorgeous too
I went through breast cancer but when I watch these videos I look at what I went through as nothing compared to the suffering these people went through I broke down in tears my heart and prayers go out to all the families who have lost love one and who are watching someone go through this I pray that some day soon some sort of effective treatment can be found to fight this disease or even a cure RIP all those this disease have taken
What a beautiful chair. She made a christmas tree out of a chair.
Thanks for the spychoanalysis you clever piece of shit
I have 25 years and after watching this i think i'm gonna get up of my bed every morning and be thankful with my health and hoping i will never suffer something like this at least until i grow old. Be strong people.
Same.
Same
I am thankful for my health, but i have constant health anxiety so its very hard
Growing olds not all it's cracked up to be
same
I've lost 3 family members to ALS, including my Mum this June. My heart goes out to everyone in this video. The bravery of this reporter is exemplary.
Stainless One I'm so sorry. This is a devastating disease. I pray you are immune from it.
Sorry to hear about this tragedy. Read my post on this page and you'll see that there is a cure, and you need to have your free copper level tested and lowered if it's elevated, because if 3 family members had ALS, you most likely have a defective ATP7B which causes free copper to build up in the bloodstream. You can get your free copper level down and prevent this from happening to you.
hope you are doing well. I lost my father 8 years ago to ALS as well its a hard cruel disease.
I'm sorry for your loss. I have a friend that was diagnosed with it last month and he is trying all possible forms of treatment
I can't even image losing 3 close family member to ALS. MY father passed away from it but if my mother would've had it as well I would've killed myself.
My dad passed away this year after 6 years old ALS. He went 4 years continuing to talk and eat properly, the last 2 years. Spent with a feeding tube, lost his voice completely, the ability to move his right arm, and in the last 2 months of his life, began losing the ability to walk and lift his head. Both arms became immobile. He decided to die through medical assistance in dying. It was the most difficult thing I've ever had to deal with in my life, and of course in my fathers life. This disease takes absolutely everything from the person. I commend any person who has been diagnosed with any type of disease, but with ALS it is a countdown clock. My biggest hope in life is that someone can find a cure for this disease so that no man or woman or family will have to deal with this anymore.
I watched a close friend pass away from ALS. it was devastating. The paralysis, the steady decline, the pain. He was a prisoner in his own body. Diagnosed at 28, gone by age 30. That was so difficult for everyone that cared about him.
In loving memory of Marc Riffice. A true warrior that fought to the end. A man that never lost his sense of humor. Our last conversation was about how he just wanted to get laid ONE MORE TIME before he passed away, lol. Our boy got his wish too. Man, do i miss him. My heart & sympathy are with the families suffering through this terrible disease. There will be a cure/treatment one day. Something that will give ALS sufferers the chance to live longer, more fulfilling lives. I feel it in my bones y'all. So keep faith. It's all we've got.
Keep the faith and my heart goes out to the families who have loved ones suffering from this robbing disease.
My family is dealing with ALS, my sister in-law was diagnosed in 2020, she was 22 years old then. She is unable to walk on her own now. It is truly heartbreaking to watch her life change so drastically right before our eyes. We’re praying for some healing, cure and/or treatments to help her and so many others fighting this horrific disease🙏🏽God bless all that are fighting and bless those that have transitioned on🙏🏽
Its just so ridiculous. These people are dying anyway. Theyre basically saying i want to donate my body to science. If not to cure myself, but to progress the cure and save others. What better gift can you have for science? My heart goes out to all of you suffering.
Yeah better than dying in their beds, they could you know, go out progressing science and the cure. Fucking govs man...
are you judging those with ALS?
Lol, what? They literally said it's ridiculous that the government is refusing to allow these people to consent to being given an experimental drug, regardless of the risks.
dodge10P1N by
I also have a lot rare immunodeficiency disorders. My body will also be donated for research to help those like myself who because there are so few with my illnesses hopefully medical treatments and medications will one day be covered. I participate in as many research studies as possible. Although there won't be a cure for my illness in my lifetime, I pray that I can help others in the future. Just because you have an illness doesn't mean we don't deserve the same respect, dignity, and treated like those 'normal' healthy people!
I've had leukemia, multiple seizures and a brain hemorrhage, and ALS still scares the shit out of me more than all those things combined
@@kunalpatil4157 Could say the same about you. Now, careful not to cut yourself on that edge boi.
What a brave reporter... I feel for you and every one else going through the same. Let's hope we find a cure soon. Good luck.
soonny002 seriously, as an unaffected person, thanks for bringing this to public attention. This is horrific, I hope things get better. All the people who are willing to come forward about their experience are incredibly brave, and I thank them for that.
they spent money on synthetic drugs when they know cannabis works... fuck sakes WAKE UP PEOPLE
My father passed away from ALS and I can tell you that our greedy world won't accept a cure. It's never coming and as someone who fear getting ALS because I just been found out that it can all be genetic and it just has to start with one person and the rest of the offspring are affected after that. I'm terrified for my future.
Pickett710 my father was a huge pot head years before he got ALS. Cannabis doesn't help to prevent ALS. The one thing it can really do is take your mind off dying.
Absolutely Circe,
My mom have this ALS since 2007 to present. the doctor said before she's only got 3years and luckily she's with us until now. 12years since then and i hope more and more years to come for my mother :'(
ayahuascatreatment.wordpress.com/2014/09/01/ayahuasca-ethnobotanical-medicine-for-treatment-of-als/
Seeing the man lose his step and his father holding on to him broke my heart at 16:38
Matt Bed me too :(
To be able to sit there with these people knowing that one day that will be you is heart breaking.
xCROSSFINGERSx it shows how strong and courageous she is. 💞
This was 3 years ago, Angelina (the reporter) is now in a wheelchair and at 88lbs. She's keeping a positive attidude dispite her situation on twitter. Scary disease. Praying for a cure. Crazy that $25million was raised but only $4million actually went to the cause.
Really heartbreaking to hear that .
I misunderstood as well, I backed it up to hear it again...only 4 million went to that particular research center. There are many more throughout the research community.
THATS HORRIBLE!! WHY WAS SO LITTLE OF THE MONEY ACTUALLY GIVEN TO THE CAUSE?!!
I have a lot of issues in my life but this makes me realize how lucky I am
Hello past me .. I look forward to speaking with you in the future
Very lucky!
I love you Grandma. I miss you.
My mom had ALS. It started in her mouth, and everyone thought she was drunk for a few months because her speech was strange and slurred. Once it was diagnosed, she only had two years to live. It was a nightmare. She died in the living room through assisted suicide. It changed me forever. ALS is the worst thing.
I'm so sorry Nathan
Sorry to hear that man...
Nathan Lachner 🙏
Nathan Lachner I'm so sorry, Nathan. I'm thankful that she had the option of assisted suicide. "Thankful" might not be the right word but you know what I mean.
Nathan Lachner Same exact thing is happening to me right now. It all started with my speech & I'm a recovering alcoholic,most people think I still drink or that I'm drunk.
Maan this is tragic... so very sad. It slowly tortures its victims.
Generation Fallout The worst part is that the government won't let patients take a risk knowing that they will die. I mean the patients know the risks involved..
they spent money on synthetic drugs when they know cannabis works... fuck sakes WAKE UP PEOPLE
Generation Fallout new
Yes, my father had ot for 7 tears. The last 4 he was completely immobile
I'm so grateful to all the doctors and scientists that pulled all those all nighters at Med school and sacrificed a lot of social life to gain enough knowledge to even begin to tackle this problem. They are the best almost us. Hope they find the cure
Boris Yu i know right. doctors are god dont you see?
Boris ! ALS was first found in 1869 by French neurologist Jean-Martin Charcot, but it wasn't until 1939 that Lou Gehrig brought national and international attention to the disease.
((((( 79 )))))) years and people are still dying. What was that you said about doctors pulling all nighters bla bla bla ....
this. ALS has humanity beat just like the 50 million "possible cures" we've been trying to throw at cancer since we figured out it existed.
Oscar Buckwild ...what a toxic attitude. You really should rethink how you feel about doctors. There are plenty who are nowhere near rich, and many who save lives on a daily basis.
“ALS is a very fascinating disease” that’s what my grandpa tells people. He was diagnosed in June 2016, at that time he had muscle spasms and trouble walking up stairs and getting in and out of his car. Now he can barely move the joystick for his wheelchair. It all started when he couldn’t do something that he use to do, something as simple as moving his arms or putting his shoes on. Just the other day I helped him push a button on his remote so he could adjust his bed and he looks at me and says “well that’s just another thing I can’t do”. I remember doing the ALS Ice Bucket Challenge myself and had no idea what it was for and it hurts me now knowing that I did the challenge to impress friends and put it on social media when I had no idea what ALS was. ALS has been really hard on my family and it’s taking someone I love away so fast! I hope others learn more about ALS and I hope it gets cured because no one needs to watch their loved one go through this disease.
Ryan Jones wow he sounds so strong how is he doing?
I had a friend and former neighbor go through it and she died in her 70s
Such a beautiful soul. It was hard and sad seeing her suffer.
I don't get emotional at all.....ever. But this really has me pretty bummed.
Hard to watch. The strength of those suffering with this is incredible. I consider myself a pretty tough guy and even I got a little wet around the eyes. I'm nowhere near as tough as those involved in these stories though. I can't even imagine dealing with this. I hope something can be done. Makes me pretty mad that out of 200 and some million they only got 4. Wonder where the rest went.
+Mandu chlorine dioxide beats als.
and hypochlorous acid too.
stop being a victim
they spent money on synthetic drugs when they know cannabis works... fuck sakes WAKE UP PEOPLE
Pickett 710 wake up you idiot, just like smoking it
jquest43 [credible citation needed]
My mom died of ALS. When she died in 2008, ALS was a hidden horror. Thank you for this documentary VICE. The more awareness the better chances of a cure.
Maya S 922
Maya S you are next! 😃
grizzly bear wtf man
this breaks my heart.. my father had ALS and it was the most unforgiving sickness ever. it's so sudden and there isn't shit you can do but wait for your body to slow down, suddenly you can't even piss by yourself or walk up the stairs or anything. i really feel for anybody that has to go through this hell, and it really puts perspective into mind about how much we take for granted.
My dad had it too and passes away in 2007 at age 58. Rhe worst part of him having this disease? That he was the kindest and most gentle father and husband. It sucks that assholes get to live long lives
LPT 98 it is awful, im sorry
so sorry for your loss may your father rest in peace :(
HOLY COW. At 8:29 they said that ALS TDI was the only lab soley dedicated to ALS, and they only got 4 million of the 200 million raised by the Ice Bucket Challenge?!? THIS IS INSANE! THAT is a story in itself. 🔴
Michael Burry yup that’s why I always donate to places like this
I believe most of the money went to providing PALS with supportive assistance, chairs, financial help. In general, 1 billion USD is not enough to get a single drug to market. What is really needed is the US Govt to fund those programs like they do for other large endeavor projects. ALS dis-proportionally affects military veterans who served in combat.
ALS should of gotten the full amount, that is why people donated!!!!!!!
@@josephfilm73 I wonder why vets get it, could be a big clue to a cure
Vice really stepped up their game with this one, not to belittle the story of course but it's almost beautiful to have seen their development in news stories over the time.
they spent money on synthetic drugs when they know cannabis works... fuck sakes WAKE UP PEOPLE
smoke a blunt n get cured
There is a lot of information too consider drug triles, beacause the more money they can raise they have been getting close, it is so scary I pray for a cure !!!!!
Pickett 710 she actually has CBD oils in her cabinet in the beginning I noticed lol
It must he terrible knowing you'll end up not being able to function without help and there's no way to stop it
The worst punishment for just living life. Just shows how objective nature is.
Sounds like a parasite to me.
It makes it so much harder knowing most patients are completely mentally aware, it's like being trapped in your own body.
Ryan//// Death is the ultimate cure. Cut the misery short.
I lost my uncle to ALS in the late 90's and early 2000's...It is absolutely one of the worst things that can happen to a human being. It literally kills your muscles. You stop being able to talk eventually. I saw a 6'2 240lb man just get destroyed by this....It was absolutely the worst thing, ever. I really hope that one day we can fix this and find a cure because it truly can be anyone. Noone had ever heard of it back then but I can promise you it is one of the worst things that can happen to a human being. You eventually stop being able to do anything at all for yourself including eat, stand up, talk or go to the bathroom...I still miss him alot even though I was young but I will never forget my dad having to leave work to have to go pick a man larger than himself off of the floor because his wife could absolutely not do it...He would be so embarrassed andI just wish he wouldnt be...Okay, I have to stop now but please...this is a serious disease that needs to be taken serious. Thank you for listening because I dont talk about personal things online.
WOW! This reporter is amazing. I cant imagine the feeling she had knowing if there is no cure she is literally looking at her future. Heartbreaking :(
I was diagnosed with ALS On my 20th birthday in January 2013. I'm lucky to have lived so long after onset in March 2012. I am hopeful that there will be a breakthrough soon.
I wish you continued luck! I hope there is a breakthrough soon too.
C Morr good :) stay fighting.
Alexis Crow stay strong
I feel like a breakthrough is really really close...I was diagnosed last week
Strength and courage to you. You got this!
What the fuck? Her doctor wouldn't tell her that she had ALS or suspected that she did? He just gave her a surprise phone number to call?
CptCanada Yeah these doctors are assholes and they honestly don't give two shits. They just want your money trust me. The medical world is so rich for "not knowing" what to do
CptCanada
Right? What a coward.
Doctors pull that shit all the time
same thing happened to me. It is a shock. I was told finally by a Doctor but I knew by then.
CptCanada that was cruel of that doctor..
How terrifying. I’m so scared of this disease and my heart goes out to all of the people who have to live with it. God Bless you all.
I know first hand how horrific this disease is. My mom is dealing with this now. I pray that someday we will have a cure. God bless to all that’s affected.
This needs to be on YT's trending front page. I know this can be hard to stomach for most viewers, but this needs more awareness.
If only we could spend as much money on curing neurological diseases as we do political campaigns.. . . .
Also “defense”. We spend $600B more than the 2nd place country does. Imagine if we spent $600B on finding cures for things.
This
@@ken_in_atx9619 yes
@@ken_in_atx9619 I have always agreed with you.
From this point forward, I question it, however (although I still agree it has been a waste of money the past 30 years).
Watching Hong Kong get taken, and now knowing Taiwan is next sucks, honestly. Makes me wonder who's next. Will they stop at SE Asia? I wonder how safe South Korea and Japan are from occupation in the long run. I hate to imagine what I might see in my lifetime just because we wasted our wealth on defense precisely when we didn't need it.
There is a cure... the Government just wants us to spend BILLIONS.
I lost my Aunt to ALS 5 years ago. I watched a beautiful woman so full of life, love of dance, cooking and a heart that gave us all so much unconditional love slowly, very slowly, be taken over by this horrible disease. This monster illness hijacked her body taking her ability to do the things she loved. It took her from us slowly. From being able to walk, to being in a wheelchair, from loving to dance to wishing she could just have one more dance with my uncle, from loving to cook to being unable to feed herself and eventually being unable to eat at all and have a feeding tube, from singing to silence, from laughing til she couldnt breathe to being unable to breathe at all and being on a ventilator. It took every part of her world she loved and left her watching motionless and silent with just the sound of the ventilator. In the end, after being trapped in this now body that was now so foreign to her, she chose to be removed from the ventilator, feeding tube and have our family and an amazing hospice nurse with her as she said goodbye to go on to a place where she could not only dance or walk but soar. I pray every day for a cure. No one should have to go thru this or watch someone they love go thru this. Praying for a cure.
Your aunt's story brought tears to my eyes, thank you so much for sharing. May she rest in peace.
Wow so sad, yet beautifully told. I can tell your aunt loved and was and still is loved. ❤️😇
Wow everything you spoke about is almost exactly what I’m facing. I used to be such a happy woman with my 3 beautiful daughters and now I don’t even recognize myself. I’m just a trapped soul in a body that is deteriorating while my daughters have to live in misery and watch me suffer! This disease is no joke. I don’t care how many people say oh I’m gonna fight this disease because in the end you will eventually lose. There’s no fighting ALS, it literally takes every bit of you little by little and you have a front row seat to your own death. I can’t wait for the day of eternal joy. Where I’m finally in a place where sickness doesn’t exist. Stay strong to whoever has ALS, Jesus will free us one day. Be ready ❤
I just found out that my favourite teacher has ALS. I'm going to see her tomorrow. She can't walk or talk anymore. She cant move. Im going to cry when I see her honestly.
For those interested Angelina Fanous is still alive about 4 years on from her diagnosis of ALS
She just hiked Patagonia, with the help of guides
@@amazingabby25 does she have an instagram or youtube or something?
M A she’s on twitter, just type her name
Younger people usually live longer with ALS than people who get ALS in their late 40’s.
This is the fucking worst disease on Earth. She is SO brave for doing this
This narrator is so strong to do this documentary. I pray for her and all those suffering with this horrible disease. :(
This sort of stuff makes you realize how much just plain old health is taken for granted.
Out of all of the stories, Beth Hebron's breaks my heart the most. She seems like such a beautiful soul. So full of life. She had the world at her feet, with a future filled with endless possibilities. I Just want to hug her and comfort her.
Me too. I wonder how she's doing
My mom was just diagnosed with ALS and I watch this video to steel myself and be prepared for her progression.
My mom was diagnosed with ALS almost 2 years ago. Now I'm here beside her in an ICU bed. I really hope they find the cure very soon. I just don't wanna lose my mama.
i’m sorry for your loss , I hope you are doing ok since it’s been 2 years since you left this comment .
I hope progression has slowed and still keeping hope that there is a breakthrough
This is gut wrenching, but so important for people to understand the pharmaceutical issues plaguing us. I work in the medical field and I didn't realize so many young people were impacted by this terrible disease. I wish there was something, anything to do to take away this tragedy away!
I lost my dad in 2004 to this terrible disease. He was 37 years old. Thank you so much, to all who took part in the ice bucket challenge, who took part in research, and in the development and publication of this episode. I will never get my dad back, but the hope that some day someone else may not lose their friend or family member to this disease, that no one else may have to suffer in this way, or that a breakthrough with ALS may help then many other people who suffer from other nurodegenerative diseases makes me incredibly happy.
Damn, sad! 😭😭😭 Makes you appreciate your life and the small things!
Ugh, Beth's story is so incredibly heart-breaking. You can hear the pain/suffering in her voice. I can't even imagine how I would take losing all of my physical functioning capacity so early in life.
That poor girl had a promising career and was athletic and in her 20s suffering from this disease. Too sad and her poor family. Shes too young but it doesn't matter how young or old, a cure should be found or to find a way to slow down the disease and stop it progression. Very heartbreaking.
That reporter is strong af. I can't imagine being in her place. I wish that they find cure for this and many other diseases in a not so distant future...
The human body is amazing but sometimes it seems so fragile.
I am a caregiver and I have cared for a man who had ALS Lou Garret's desceas and he was the most caring man I have met. He passed couple years ago and he was a strong man until his last breathe. What a horrible desceas and what's more horrifying is to be trapped in ur own body knowing full aware of what's going on but u can't do a damn thing to stop it. I pray to God that that day comes when no one else has suffers to from this desceas. 😥
Powerful. I pray for a cure and for everyone affected by ALS.
Read a Bible and you'll see that God doesn't "give" people illnesses. I'm not going to write a novel to explain....read it for yourself.
Nigel Henry just stop, this guy just typed an innocent comment showing he hopes we someday find a cure but you had to ruin it.
My dad just passed away from als 7-19-19. RIP Pops, Love you. See you in heaven
RIP
Was fighting back tears the entire time I was watching this. The reporter is so brave to go through this. I pray for a solution to the horrible disease. These poor people :(
I cried because the video is so sad, devastating and heartbreaking.
Absolutely deplorable that Americans live in a country where needless war and corporate greed take precedence over human welfare.
My grandpa died of ALS just two days ago. So extremely sad this horrible, horrible disease.
Brings back memories of my loving brother. He was diagnosed with Muscular dystrophy LG. Doctor's said he only has 3 months to live. In 3 months he was in life support fighting to live. We strongly believed in God's love and mercy. He survived and end up living 11 years more until his day came and he passed away this month of April 10 years ago. 😢 God bless you all my prayers go out to you.
This poor reporter watching what is in her future...... and of course the poor people she interviews. i hope they find a cure.
This documentary made me cry so much. I just remember staring at my grandma, she stood still in the bed, she couldn't even open her eyes. Her fingers and toes were curled. She used to be full of energy and now she looks like she's deteriorating. It's the saddest thing in the world.
I'm watching this 5 years out...what progress has been made since?
Watching this in 2023. My grandmother, whom I loved dearly, lost her battle with ALS in 2020. This disease is heartbreaking to watch. I pray for a cure.
powerful and terrifying
Wissam passed away this week. Praying for everyone fighting this terrible disease. I hope your struggles end with a cure.
So sad, and to see how good him and Beth were doing before the disease is really scary. A gun youtuber named James Yeager brought my attention to als as he recently passed from it and it was so sad as it all started 8 months ago when his tongue became numb and it sadly took him within a year. It's really scary how it just seems to happen out of nowhere.
@@cwatson42785 That's terrible 😞 Yeah, it is scary to think it could happen to anyone out of nowhere.
Any idea how Beth is doing? She use to be active on social media but haven't seen or heard about her in years :(
I bet if the FDA director Janet had ALS or someone close to her did she wouldn't be so callous about it. I could here the frustration in Angelina's voice.
Janet Woodcock is a hero and doing her best in a very complex situation. There are many things to consider here.
C OAKLEY vvcccds this is so sad
C OAKLEY not really the FDA operates on a regulatory principle. Meaning a drug once found, must show that it works, and also not be harmful (meaning you're finding the toxicities if they exist). Once it does both they work through the approval process. There's a strong reason why the United States didn't suffer from thalidomide. It's not the best way to do it and I think they were right about how they approach the problem based on disease state. For something like this a drug that has some effects might be worth a trade off at some point. Vs a drug that causes massive side effects for something that is self resolving (ie a decongestant for sinuses that causes massive strokes).
@Karen Maloney
A hero? Who paid you to say that??
Angelina Fanous the reporter on this story is still here, she's amazing. Heart goes out to everyone featured in this piece.
My mom passed away two years ago yesterday from ALS, and everyday I pray it would of been me then her
My father was diagnosed with ALS 15 years ago. He was given 4 years and he's still alive. he lost his ability to talk on the 3rd year and to walk on the 6th year. Lucky for us, stem cell procedures are allowed in my country. Throughout the years he's received 4 stem cell treatments. The first one was pretty basic, but as time passed, treatments became more complex, targeting specific parts of his nervous system. We never noticed any positive changes after treatment. But I'm pretty sure that they have helped by slowing down the progression. He still breaths on his own, has the ability to cough and burp. He refuses to use any breathing or speech device. We drive him to work 3 times a week, he no longer has an active role on his business but he loves to supervise and share his 40 years of work experience, I'm convinced that work has played a key role in his fight against ALS, keeping him motivated with a purpose to keep living.
I hope this serves as motivation for families that have recently joined the fight against ALS. Stay strong and enjoy the little things in life, they are the most rewarding.
Which country? How is he doing??. Thanks
Thank you for making this video and good luck to you all, my mother-in-law was diagnosed 4 years ago and was just moved 2 days ago to hospice and is now unresponsive. This is such a horrible disease I've seen what it does first hand and I can't even begin to imagine what it is like to live with this disease. I wish you all that are battling this disease the best and I pray we find a cure before more people suffer at the cruel hands of ALS.
At the end of the day it’s all about money. What a sickening world we live in. People should be working tirelessly to find cures for all diseases. There should be an unlimited budget. Life is priceless.
Exactly! Imagine if all the money spent on senseless wars and worthless walls was channeled into research!
My mom recently was diagnosed with ALS. This hit so close to home I couldn't help but start crying. I'm glad you made this, even though it was hard for me to watch. Thank you.
This made me really sad actually.... Couldn't imagine living like that.. Shout out to the people in the video, stronger then I could be.
Wow. This was a hard to watch, but I'm so glad I did. I am a speech-language pathologist in training, and it is super important for me to understand this disease. I can't get over how brave this reporter is. It is amazing that although I'm sure it was hard for her to hear and see a lot of this, she put aside that fear in order to teach and raise awareness about ALS. Much respect.
I've actually seen the devastation first hand. Having to bury a friend before 30 just isn't right. RIP to my pal Marc.
My uncle was diagnosed with this disease and I’m trying to learn more information and brace myself for this... I’m devastated he’s like a father figure to me. I just want to say this lady is so strong for making this documentary knowing that she will to be in there shoes later on down the road 🙏🏼😢 my heart goes out to everyone struggling thru this disease. They told my uncle he has 2 years or less to live 💔😢 I’m not ready to let go nor will I ever.
My mom and uncle passed from ALS!! I lost my best friend that I was lucky and blessed to call her my mother!! It's a suffering death sentence and I took care of my mom from day 1 until she passed in 2014! I no I miss and love her so much! What killed me was the fact I couldn't do anything to help and take her pain away
so sorry for your loss :( rest in peace to your mom and uncle
The reporter really can’t be commended enough, life really is too brutal.
PS: a great piece by vice after ages, this is what I signed up for.
This has to be the most heartbreaking videos I've seen. The end had me teary eyed. Cannot even imagine what it's like.
Also, respect for the very brave reporter going to see what might eventually be her. That must have been very difficult to face...
Hope they find a cure soon.
I hope so too.
ALS took my grandfather from me, he passed on my 21st. This disese is by far the most brutal ive ever seen. It is not fair for the FDA to do this, in my eyes i hold them responsible
Chase Carothers sad thing to hear stay strong
C A M thank you very much!
One more thought. We should consider how AIDS activists had drugs released in the 1980's and early 90's. Groups like ACT UP would raise such a fuss and stage huge shaming protests, eventually the FDA caved and many lives were saved.
What if folks with ALS and the people who love them, as well as health rights activists, got together and started a similar campaign to raise awareness and publically shame the organizations who don't move faster on these issues?
You need someone very wealthy or a prominent politicians to contract this disease and you'll see shit happen quick.
I remember watching this episode when it was aired. What's it like now for people shown in it and the reporter?
I had no idea what ALS really was, but now I couldn't be more supportive towards it. This was one of the best videos VICE has released and Angelina, and all these victims are so brave for letting the world see them in this emotional state. Thank you
This is the first Vice episode that actually made me cry
I get bummed about having severe Asthma which limits my entire life. WTF am I complaining about Im very lucky to have a treatable condition. This opened my eyes
This goes for Mitochondrial disease patients too. Both diseases are related to each other, and share lots of symptoms. Just because one drug might not benefit one client, doesn't mean it won't for another. There''s thousands of different mito strains. I'm living proof... I too have a strain of mitochondrial disease. Sad thing is, there's not even a test that can find the kind I personally have since my tests came back negative for all testable strains. They know I have it, but they still don't know what kind. And it's not like they can administer an experimental drug on me since they don't specifically know my kind.. My doctors guess at my lifespan every time I stop in for a follow up because they have to judge by my side effects and slowly on coming paralysis. First time i was diagnosed, they gave me 6 to 8 months...
That was 12 years ago. Some how, some way, I actually made a comeback. My body was able to improve better than the state I once was. But the parts of my body that first hit with it still have conditions. it's just not so severe, and not increasing in damage. Basically I'm in purgatory. Don't know if they find the strain, don't know if I'll be the same as yesterday, don't know if I'll die typing this....
Like ALS, Mitochondrial disease lacks funding and resources. The fact that to this day, doctors have to throw darts on a board to guess the day that I DIE is a fucking disgrace.. waking up every morning knowing I could die that very day at any given time scares the living shit out of me.... But all I can do is stand here and wait for a cure..
These people are so amazingly brave.
I know for a fact that if I was diagnosed with something like this, I would take my life immediately. I just can’t imagine living, knowing the road you’re going to go down, rapidly losing abilities and your autonomy.
People like this have my eternal respect.
They might find a cure but you killed yourself
this is one of the hardest things iv ever had to watch. i forced my self to finish it. omg beth was so nice im so sad for her. how view people with ALS has changed forever. god bless
I like they chose a reporter that was in the same position
This shit has me emotional. My uncle has this disease.
DoodleKaboodle I'm so sorry for your loss. My dad was diagnosed 2 months ago, started with weakness on the left side and choking when swallowing water. It's been 4 months since we noticed symptoms and he can hardly speak or walk now. I always feared cancer and though it was the worse thing that could happen to anyone I love, but when they started suspecting it was ALS, I prayed it was a tumor, a stroke or anything else that could at least give us a fighting chance. This disease is so devastating, you literally have to sit there and see your loved one waste away.
Bronzie - Don't listen to these people that say there is no cure. Dr. George Brewer discovered ALS is caused by elevated free copper levels due to a Wilson's disease neurological mutation. I posted a whole bunch of information on this page that you can read if you're interested. Brewer was taking people that had ALS and re diagnosing them with Wilson's neurological disease, lowering their free copper level and curing or successfully treating them where they got back to normal. According to him, once he lowered their copper levels, they would start getting back to normal. Eventually they would start relearning to walk and speak again. Brewer is now retired, but there maybe other doctors at the University of Michigan that are still treating people and curing them.
Ivie
this is heartbreaking to watch. thank you for doing this piece.
Heartbreaking to watch, but many thanks to everyone who participated in this piece. It's opened my eyes to how many young people are effected by ALS.
I've seen the horrors of this disease first hand and pray that we one day find a cure. No one should have to go through this..
I never knew ALS was till my best friend was diagnosed. She put up a fight till the bitter end of 5 years. She never gave up..God brought her home. God bless each one with this terrible disease.
You do realize that God is an imaginary friend right ?
Wow, this video really opens your eyes to the suffering people with ALS go through and to the bigger problem of experimental drugs not being available to people who only have a short time left. Such a horrible disease 😢
The first video that made me cry for this first time in 2019. I pray that may 2019 be the year that doctors will finally find a treatment/cure for ALS patients.
I was just diagnosed with ALS im terrified 😨
🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻❤️
🙏🙏
Beth is such a beautiful young girl, and I love how positive she remains. I have no true idea the challenges she faces, but I know with a certainty that she is stronger than me. I love your demeanor beth!
This was so difficult to watch. Thank you for shedding a light on this terrible disease and on those who's lives it affects.
Amazing, so strong, so powerful! This reporter is incredible
Should've interviewed Jason Becker. His story is both heartbreaking and inspiring.
I took risk in the late 90s with Enbrel for rheumatoid arthritis. We didn't know the long term effects, but I didn't care. I was going to die eventually, and if it gave me the time to see my daughter grow up then so be it. I'm still here, and have other issues from the disease, but I've seen her grow up and graduate college. Soon, she'll marry and I'm hopefully going to be there for it. The long term issues mean nothing when compared to that. We need to get drugs into the hands of those who need it, and the FDA is standing in our way. No other country in the world has such strict processes as the US does. Who actually benefits? Not the patient.
who advised you to take enbrel and did you have als
The vast majority of all illnesss/ diseases are caused by processed ( unnatural ) foods which cause malnutrition, obesity, rheumatoid arthritis, dementia, Parkinson’s multiple sclerosis ALS, mitochondrial malfunction, cancers, you name it ( I have ALS, and have been reversing it through/ by nutrition and by avoiding sugars, and avoiding processed foods. Less than 4 sugars/ day n less than 25 carbs / day, on the ‘extreme Keto diet’ )
@@sandrafindlay966 My rheumatologist got me into a trial and no I don't have ALS. This was in the late 90s....
@@billbrennan8177 So crap genetics doesn't play into it? Good to know, especially since I'm the 6th generation (possibly more) with these issues.
@@VampFaye Genetics Can be a factor but nutrition has proven that it can overcome bad genetics. Nutrition is the key, yet for some reason most Dr.’s ( especially G.P.’s - General Practitioners / Family Dr.’s ) as well as most Neurologists are IGNORANT of nutrition!! ( which is very surreal / mind boggling to me ) as how can one call themselves a Dr. when they don’t know how the body functions/ what the body needs / what the body needs to avoid, etc ? ) Thus, to me, most Dr’s are nothing less than frauds!! ( drug pushers for big Pharma ) Sad, but true!! My neurologist told me he’s never even heard of anyone with ALS getting better. I just laughed and said, “ Well, here I am!” I said, “It’s called, Nutrition!”
Omg I'm obsessed with Beth! These people and their families are strong and set an example to others about how most people take advantage of life in general....much love
I cried through most of this video. It rocked me to the core. This shit is no joke. Angelina..sending all the love and good vibes. You are incredible for taking on this piece.