Aug 242014
 
 August 24, 2014  Posted by at 3:42 pm Life of Iris  Add comments

I was challenged by my dear friend Michelle to do the ice bucket challenge for ALS which tunred out to be a hectic mission as I tried to locate ice after all the stores had closed.  I recently moved to a tiny town to join Compare the Market as a software developer, and I had no freezer, and all the stores close at 4 PM. I did however manage to find ice, and bought everything they had left, 30 kg.

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If I’m doing a dare I will do it my own way so I submerged myself in true Viking style in a bathtub full of ice and cold water, and then poured a bucket full of ice (it was prefilled, but I added some more during the video) over my head. I had tried to get some help, but I don’t know many in this town and the few I knew were unable to assist on such short notice.

Do the challenge, and nominate others- but remember that the mission of the viral video trend is to get an important message across, ALS is real- it affects many of us, and we do not have a cure. We need to donate, and spread the word, to fight this neurodegenerative disease.

In the video I recommend people watch the Scottish documentary ‘I Am Breathing’ about Neil that was diagnosed with ALS (also known as MND and Lou Gehrigs disease). You can ‘rent’ the video for 3$ on their site, and the money is for he cause. It took one year to go from a healthy man and a father to 2 months old baby boy, to being unable to move from the neck down, to passing away 18 months after the first few signs. We know that the disease is hereditary, but on 90% of the cases there is no evidence of any other family members having been diagnosed. It’s a mystery we haven’t solved, that we need to solve, among other neurodegenerative diseases such as Parkinson and Alzheimer.

Please also donate to the ALS Association- regardless of whether you do the challenge or not. Let’s make sure the video challenge both brings attention and funds. Donating takes only a few minutes and you can pay by PayPal or card.

And this is why what we do matters, watch AFTER 1:56

– also if you wonder why the numbers don’t add up (in RE to me saying how many are affected) I should have been clearer that I meant neurodegenerative diseases and not just ALS. Stats are tricky, and numbers on how many are diagnosed vary from source to source. Some say 1 in 5, some 1 in 50, majority give numbers in-between. The point is, the number is high- and it can be me, you, somebody we love, you get the point.

From Harvard :

Today, 5 million Americans suffer from Alzheimer’s disease; 1 million from Parkinson’s; 400,000 from multiple sclerosis (MS); 30,000 from amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), and 30,000 from Huntington’s disease. Because neurodegenerative diseases strike primarily in mid- to late-life, the incidence is expected to soar as the population ages. (By 2030, as many as 1 in 5 Americans will be over the age of 65.) If left unchecked 30 years from now, more than 12 million Americans will suffer from neurodegenerative diseases. Finding treatments and cures for neurodegenerative diseases is a goal of increasing urgency

I nominated:

Aaron Skonnard (President Pluralsight)

Marc Johnson (my line manager at CTM)

Sebastien Lambla (OSS star & tech lead at CTM)

K. Scott Allen (software developer, OdeToCode,Medisolve)

Corina Fanatean (engineer and project manager, also my mother)

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