Scott's ALS Journey: July 2014

Awareness-concern about and well-informed interest in a particular situation or development.

"ALS has no known cure or effective treatment yet. For every person diagnosed with ALS, a person living with ALS dies. Approximately 2,500 - 3,000 Canadians currently live with this fatal disease."

Hi everyone, this could be a long one so get comfortable!

June has been a busy time as The Murray Machine, made, our now annual drive, for ALS awareness and support.

Allow me to step on my soapbox for a minute!

I'm not really in the position to talk like some expert(but you know the rules, my blog, my space!). In fact, had I not been diagnosed with ALS, I'm sure I would of continued to support various charities and causes along the way in my life. I like to think, that in some small way, I was contributing to the greater good.

But, here I sit with ALS, and strangely feel, the need to go on a bit and maybe make a little difference within this awful disease.

ALS is a "small" disease relative to the number of people who are diagnosed with it. It's not like say, cancer, where we all know someone who has been touched and affected by it. In fact, many have mentioned to me, they knew little or nothing about ALS before my diagnosis. I also knew only a little of the disease; my sister had a friend who had it, and being a sports guy, I had seen stories on Lou Gehrig and Bruce Edwards(Tom Watson's longtime caddie on the PGA), both who had ALS.

My knowledge base now, obviously, has grown and as long as I have a voice I will share my experience with others and put my ugly mug out there as one of the faces of this disease. I hope that in doing this that it continues to help raise awareness for ALS.

So, June is our month to shout from the rafters and fight to find a cure and continue support for this awful disease. No disease deserves to be left out, but these neurological diseases:Parkinsons, Alzheimer's, ALS...take such a toll, not only on the individuals, but also on their families and friends. It's mentally, financially and spiritually exhausting.

Look, I'm a realist and I recognize the cure probably won't happen in my lifetime. We raise awareness to inform and educate others and provide and drive whatever monetary donations we can for research and support programs.
The support programs are key. We have seen first hand how the ALS Society provides its clients with the services necessary. From equipment, clinics, medical services, education...the list goes on... and they have been there for us to help maneuver through the myriad of "stuff".

It's an expensive disease. ALS is progressive so you are always needing something else.That is where the Society helps make things possible for their clients. It is from their fundraisers and your donations that drives the support that is needed.
Our family is blessed to have so many around us. Insurance doesn't hurt either. The financial impact for us alone, in just over 3 years, is nearing $200,000. Imagine someone who has no insurance or support to ease that burden.
The ALS Society is working for and making a difference in their clients lives and that makes this cause worth fighting for!

That's why we stand up in June, and throughout the year, and shout "ALS, come and support us!"

Step down from the soapbox!

ALS Plane Pull May 25th

This year, along with the walk, one of my "besties" Gus called and said "hey I think we should get the boys and go pull a plane!" Of course, knowing I wasn't pulling, replied, "I'm in".

So Gus rallied 9 other of the "besties" and on May 25th The Murray Machine Middle Age Wonders arrived at Bombardier set to pull a 37,000lb plane a 100 metres for ALS!

What a great day! Over 20 teams were involved in this well organized event.
It was quite a feat!
We cheered on this finely trained bunch as they pulled that plane to the finish line in just over a minute. I suspect we had the most "mature" team placing not far behind the firefighters and personal trainers!
Led by Gus, the other BFF's included; Goalie, Tuna, G, Gilksy, JP, Paulie, Hursty, Mo and Yo Adrian!

They did us proud, thanks to the boys and you can scratch that one from the bucket list!

Have a look at their pull!
(if the link doesn't work...youtube-Murray Machine ALS Plane Pull)

https://www.youtube.com/watch?v=L6n8fb_ly9M

Ben filming the pull

The haulers-Paulie, Mo, Tuna, Gus, me, JP, Goalie, Yo Adrian, G, Hursty and Gilksy!

Our cheering squad

S&S

Georgetown/Acton ALS Walk, Saturday June 7th

On a sun filled day over 1000 people showed up in little ole Georgetown for our 6th annual walk for ALS!

Our goal this year, to break the $1,000,000 mark, cumulative, over the 6 years.

Well, "thanks a million!", we did it! Our walk raised over $175,000 pushing us well past a million!

Our family would like to thank everyone who participated, sponsored someone, sent a note of encouragement...your continued support and love makes each day of this journey bearable.

The Murray Machine had over a 100 walkers and we raised over $50,000 this year! Thank you, thank you, thank you!

We'll be back again next year!

Wishing you a safe and great summer!