Many of you are probably sick of seeing the ALS Ice Bucket Challenge plastered over social media. I would urge you to at least hear me out, and watch my video. ALS (Amyotrophic Lateral Sclerosis), known as Motor Neurone Disease in Europe and also known as Lou Gehrig's disease, is a terrible neurodegenerative condition. This means that a sufferer will have their muscles waste away. They will most eventually have difficulty speaking, swallowing and breathing and may well be completely paralyzed and mute. It is normal in most cases for sufferers to have a 5 year life expectancy at best, although some live longer. Following the sad news of the death of Hal Finney, a former Mattel programmer and cryptographer for PGP, I thought I'd share my personal experiences with the condition. Most people don't know anyone with ALS - they've never heard of it. At least, that was the case only a month ago. Be cynical about the challenge all you want, where the money goes, the ethics of the charities and whether people actually bother to donate or really understand the condition - at least it's getting more recognition for the disease. However, I am in the unenviable position of knowing two people with a motor neurone disease - one lives locally, the other lives in the US. I've known my friend in the US for at least five years now. He used to work for Atari, Sega and GT Interactive. He's worked in various capacities on many titles on Sega, Nintendo and Sony consoles, including testing, Third Party Licensing and maintaining workstations and servers. I guess he's one of the lucky ones, as he's outlived the normal expectancy. However, his condition is deteriorating. I usually remain fairly private on here to all but a select few, but I felt it important to share my video with you all. Please take a few minutes to watch it. Now... the important part! I challenge ALL OF YOU! Anyone who is up for it, please feel free to make and share your videos of you making wet fools of yourselves in a good cause. And please, please donate! For details of your local ALS/MND charity, see www.alsmndalliance.org/directory I don't like to get into the negativity that's arisen, but briefly..... Macmillin Cancer Support in the UK hijacked the Ice Bucket Challenge. They say they didn't (citing a New Zealand cancer charity doing it first - yes, there was the cold water challenge long before, it's an offshoot), but they did. They PAY Google to be top of the search results. The challenge is supposed to bring on an attack of the motor neurons - hence its relation to ALS. Stem cell research is important for ALS research - but the most useful form is taken from skin cells, not foetuses. Fear not, Catholics! Animal testing is a tricky one. I don't approve of it at all. However, the FDA and EU require prescription drugs to be tested on animals before humans - two animals in the UK. So drugs for cancer or any illness have the same treatment. No charity is less worthy than another. They all do good work. Just because there are less sufferers, doesn't mean they need less money - it's nice to give them recognition, even if it is with a fad that will pass. Charities HAVE to spend money to get people to donate, it's a fact. Sadly, people DO NOT just donate. You have to bring awareness to both the disease and the charity. The Ice Bucket Challenge has done that. FOR FREE. Last year's expense sheet doesn't dictate what will happen to the money. 7% may have gone on administration (I think around $2 million) last year. This year, the admin costs will probably still be in the same ball park, but the huge increase in donations means it will be a lower percentage. Basic maths, people! Research is NOT the only reason you're donating. And it's not only 28% that went to good causes. Over half of last year's money went to research AND helping sufferers. That's important. Another third went to educating people and bringing awareness. Charities have expenses. They have to rent premises. They have utility bills. They use paper and ink. And yes, it's a business and people have to run that business and get paid. Sure, $330k is a lot of money, but they're the CEO and they know what they're doing. In fact, charities in Britain, a country 40 times smaller than the US, have CEO's on nearly as much! To end on a positive note, if you haven't seen the documentary Not Dead Yet about legendary guitarist Jason Becker, either try to do so... or at least watch his Ice Bucket Challenge. A truly amazing man. https://www.youtube.com/watch?v=m4RT-J_20aI Thank you for taking the time to read this!
Only just seen this post reto, however thank you for sharing your video and providing a detailed post about ALS / MND. I've known ALS as Motor Neurone Disease (MND), unfortunately my cousin was diagnosed with MND around 5 years ago and sadly passed away in February this year. One of my earliest memories in life is actually been a page boy at her wedding when I was around 4 or 5 years old. Like yourself i'm a private person and don't really wish to share personal things on public forums, however I just wanted to say that you really have done a good job with the video and your post in general.
Sorry to hear about your cousin. It must be so hard to be diagnosed with any condition such as this, where you know you haven't got long left and your condition will deteriorate, but it is equally hard to watch friends and family suffer that fate.
