A cause in search of a cure: all you need to know about ALS

I AM ALS. I AM DEB.

At DIEMlife, if we’re not making a difference, we’re not doing our job. Impact is everything to us – walking our talk, and matching word with deed. Our ethos is rooted in getting healthy and giving back – we bring both together to make sure each Quest® is a success. So, when co-founder Tim’s aunt Deb was diagnosed with ALS, we were all hands on deck.

ALS (Amyotrophic lateral sclerosis) is a progressive and degenerative neurological disease, and within two to five years after diagnosis all the major muscle groups in the body will likely shut down.

It’s an agonizing loss of autonomy and movement. It’s a shutdown of the self, and an erosion of all those essentials in life we take for granted – holding someone you love or simply holding a mug of your favorite mocha. From brushing your teeth to breathing, from waving to walking, from talking to taking a sip of water – each and every action that is controlled by your voluntary muscles switches off.

And ALS doesn’t discriminate. While 10% of sufferers get the disease through their genetic heritage, a whopping 90% have no known cause or origin. ALS can hit anyone at any age at any time. But it’s the stories behind the symptoms that hit home hardest – like LA-based former NFL player and firefighter Eric Stevens, who was just 29 and newlywed when he was first diagnosed.

But, like so many people with ALS, he wasn’t going to sit back and do nothing. He’s on a mission to access NurOwn, the first new treatment for ALS in twenty years, and he’s lobbying congress to speed up drug trials and save lives.

There are so many ALS advocates like him, fighting the good fight. Tim’s aunt Deb is a wife, mother and grandmother – a true matriarch – who won’t let her failing motor functions get her down. Although in a power chair with a ventilator and feeding tubes, her family are still the center of her universe – and she’s not giving up or giving in to the disease. And that’s a mindset we share with her. We’ve launched A Mile in Their Shoes – ALS – Syracuse, so that you can do the things that Deb can’t, all in support of ALS sufferers and caregivers. With team-building tasks and a 282-mile virtual race, we aim to raise funds for ALS – to use our ability to move where others can’t, and to be moved by the stories of steely determination that all ALS sufferers seem to share.

So, what are you waiting for? Move… and be moved, in support of ALS.

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