Why we want to raise awareness for this cause
Do you remember the Ice Bucket Challenge? I'm sure you do. You might have
even done it yourself.
But do you recall what all those celebrities raised money for?
It was a condition called Amyotrophic Lateral Sclerosis, or ALS.
The ALS Association made the Ice Bucket Challenge famous, but not a lot of people know what they did with all that raised money. A lot of funds went toward finding a cure for ALS — and its variant, Primary Lateral Sclerosis (PLS), which I was diagnosed with a few
years back.
PLS affects motor neurons that control voluntary muscle movement.
As these condition progress, people might be unable to walk, eat, speak, and use their arms and hands.
The need for home care becomes essential.
The ALS Association also uses donations for home care.
Every day, hard-working home care nurses support people with ALS and PLS. They not only provide medical care but cook meals, do laundry, and provide some
much-needed comfort and companionship.
We want to increase awareness about all of that.
I can't imagine going through PLS alone. My support network consists of my wife and kids right now but will eventually include home care nurses.
So I'm one of the lucky ones.
That's because most insurance programs and Medicare don't cover home care, even though everyone with ALS or PLS will desperately need it at some point.
The average life expectancy of someone with ALS is three to five
years. That might not sound like a lot of time, but imagine spending that time without the use of your limbs and not having anyone by your side. Or being unable to swallow. Or talk.
I cant bear the thought of anyone having to face this alone or without the proper care team. The ALS Association has programs that help people with home care and medical equipment.
However, people like us can only access these programs if the ALS has funds.
That's why we have chosen to raise awareness about home care for ALS, PLS, and the ALS Association through our new apparel brand and our race team. We don't want anyone to have to go through this alone.