Drenching each other in ice-cold water, great laugh, why not. But what good is that doing, is there something more important than recognising a condition exists?
ALS or Amyotrophic lateral sclerosis belongs to the broader set of neurone degenerative conditions known as MND. Other more known forms include MS, Parkinson’s, Alzheimer’s to name a few. Not heard of ALS until the Ice Bucket Challenge came along? Everyone knows Stephen Hawking, ALS’s most well known sufferer non-typical in that he’s still alive.
Most people with ALS die from respiratory failure, usually within three to five years from the onset of symptoms. The median survival time from onset to death is around 39 months, and only 4% survive longer than 10 years. Guitarist Jason Becker has lived since 1989 with the disease, while physicist Stephen Hawking has survived for more than 50 years, but they’re considered unusual cases. – Wikipedia
Simply put, neurones are electrical wires that carry signals between our brain to muscles and sensors in the body. ALS involves the wires that connect to the muscles, resulting in either no signal, constant signal or unpredictable firing. Taking the metaform as far as I can before killing it; The issue is similar to complex electrical systems such as cars. Quite often you can have what appears to be a simple problem such as a light that comes on unexpectedly or window that fails to operate reliably (upcoming post about Airbag light….). Much diagnostic work is done, sensors or lengths of cable are replaced and still the problem persists. The human body is far more complicated, and whilst we can understand much about why a problem occurs, actually fixing it is another matter.
For all the marvellous vital work our medical professions do to keep us alive, they really aren’t much more than the Sunday DIYer working on a car. Even at the limits of medicine – brain surgery – more closely akin to bashing a deformed wheel into something with many flat sides that it’s almost circular, than having the ability to replace the wheel. The equivalent level of knowledge to a professional garage mechanic doesn’t exist and the tools, schematics and replacements of the production line are a sci-fi fantasy away. Our best hope is finding other recently broken cars and taking the bits of them to keep on rolling.
Sir Patrick Stewart doing it with maximum style, I must admit after seeing so many celebs doing ever more crazy amounts of dousing, I did fear whisky wastage. Fortunately he gave a spin on the challenge that will probably become one of the most popular done.
Is the challenge really the answer? check out some professional media musings
Stem Cell Research
Stem Cells and MND, wealth of articles showing the potential.
Stem cell research doesn’t exclusively mean embryonic matter, Pluripotent – the potential of stem cells to form other unrelated cells by resetting the initial state meaning use of stem cells from blood are just as important. But while people equate the field with the notion of babies in lab jars, support for funding just isn’t available. We are at real risk of (deliberately unhelpful pun alert) flushing the baby out with the bath water in regard to perusing research.
The Real Solution – Action you can take
#1 Donate – These are the guys I support
#2 Donate – But not money (special eligibility requirements)
Until writing this post, I’d never heard of the NHS Cord Blood Bank; or the idea that the umbilical cord could be so important in saving peoples lives and a fantastic free way to aid research.
#3 Donate – But not money (more flexible eligibility) If you’re aged between 16 and 30, you can potentially save peoples lives and aid research.
#4 Educate – Take the time to explain MND in general to your kids, don’t let someone struggling to walk be made fun of or shunned. Knowing what ALS is means jack-shit if it’s not applied to how you treat people, be compassionate, seek to make people feel both accepted and alive.
#5 Support – Vote for politicians with the strength to support social change and get funding to research projects. Supporting research from the coffee table is very effective long term, sure your mate might not be involved, but your mate’s mate might be on a funding council or a tired researcher considering switching projects.
#6 Strive – Ply your trade or put your mind to advancing humanity. Think about the problems and explore novel solutions. You’ll probably not come out with the medical remedy, but theirs a lot of engineering around the problem that’ll make lives easier, more productive and enjoyable meanwhile.
I would like to point out, that for those that perform the challenge (and donate) I do think it’s a positive step and certainly not suggesting it’s not a worthy contribution, just looking to add something different and stir a little thought. Maximum respect to my friends who found inventive ways to take on the challenge, especially the guy who jumped into a stream-rapid/waterfall for the ultimate super cold plunge.
So like Patrick Stewart, I’ll be avoiding buckets of warm water with ice cubes added (ahh yes, how many people thought of that one…), donating an undisclosed amount to an actual charity that supports research into ALS/MND and enjoying a scotch.