RockOut for ALS Awareness

19 09 2012

Often Awesome Episode 20

For those of you who have been tuning in, looking to see some of what I’ve been alluding to through the Iron Horse Challenge page of Facebook, I thank you and also want to say I’m sorry for the delay.

Sept. is  a mix of emotions.  It contains the seed of this event and of all the efforts that have followed, as it was the month that my mother was not only born in, but also the one she died in.  It is the month that the Walks to Defeat ALS take place in Ohio, not in just Columbus, Dayton and Cincinnati, but all across our state.   It is this division, the distance between the Northern Ohio ALS chapter and Central and Southern Ohio ALS chapter, and the 6 separate walks that take place in large and smaller communities,  who all told providing the support for the whole of the ALS community in Ohio.  It was this that inspired me to create the IHC and to attempt to connect dots on a map, to the potentials of human connection that is at the root of supporting our pALS (people with ALS).

When I started this event 6 years ago, I was barely aware that a local chapter existed to support those suffering from ALS, or that there might be other communities less fortunate, let alone that the Columbus Walk to Defeat was held not even 1 mile from my parents house.  Such lacking awareness is part of the condition of the disease and furthers to damage caused by muffling the soft voices of those suffering,  and which robs the community of the roar that it needs to raise awareness: an Awareness piviotal to securing the funding and the motivation that is needed nationally for a cure.  Simply…United we stand, Divided we fall.

2 years ago I realized that my goal to Unify Ohio in its fight against ALS was not complete, that it couldn’t be complete as it wasn’t whole enough in its action to support the idea.  This came with the realization that our state is  cut in half between two ALSA chapters.  It presented a challenge to reach further and I took up this obstacle and I rode 157 miles from Columbus to Canton to participate in the Walk to Defeat ALS there.  The journey  brought me through lands rich with Amish and Mennonite communities, through the last remnants of the Ohio black swamps, and over hills that are the lingering breath of the Appalachian legacy.    The voyage brought me to the realization that within any of these communities, there could be families struggling to maintain themselves while wrestling with this disease, who do so without an army of voices, a media consciousness, or a motivated medical community.

Could a ride connecting a few Walks do this?  Ask that of Pelatonia.  Ask that of the MS 150.  Can we raise the consciousness?  Can we change the contour of how a populace demands a cure?  I think we can.


Without You! We go Nowhere!


How to RockOut for ALS Awareness:

Last year the company Goal/Zero did a humbling and amazing thing by donating to our Iron Horse Challenge event with nearly $300 worth of RockOut portable, weather and impact resistant USB powered speakers.  Riders who participated on the newly dubbed “Often Awesome Express”, honoring Tim LaFollette and the Often Awesome Army, each received one for their riding nearly 70 miles in 5 hrs, from Columbus to Dayton/Fairborn to participate in the Walk to Defeat ALS there.

Since this ride is in tribute to Tim, who was an amazing and talented musician, and the OA, who managed to host many musical shows to not only raise awareness and connect many communities under its banner, it also brought up the need to raise the bar on how we can stay connected and give voice to this fight.  Tim was fantastic about raising his voice – in song, in deed, and in Defiance of ALS.  The fact that we have Goal/Zero RockOut Speakers to give away is beautifully fitting.  All that being said…I have a challenge for you:

This year I have a few remaining speakers and they will go to 2 motivated and wonderful social media megaphones.

On  Saturday September 22nd, the day before we ride from Columbus to Dayton, I will post a musical video link from this site.

To win the speakers you need to do the following:

  • Find the message on the Iron Horse Challenge Facebook page that will be posted the same day.  It will have a message fragment and a link.
  • Copy the link and fragment and put your name in it (this will be obvious where to do that)
  • Post the completed message and link to your Facebook page as your status with the attached music video in the ‘comments’ below and tell your friends to go to the IHC site on Facebook and post your name (in the copied message fragment)
  • The person whose name is posted on the IHC Facebook page the most or who has the most viral links to this blog or the IHC page WINS the Goal/Zero speakers!!!!

This is an awareness campaign.  I understand that the economy and many other factors are distancing people from donating to many wonderful causes.  I know that social media is a powerful tool and can help as well as oversaturate and dull a message.  So to combat that I’m hoping that an modern take on a ‘chain letter’ can help me raise some awareness and help us to RockOut the ALS Awareness!

You do not need to donate any money to win.

You don’t need to ride or walk.

You don’t need to live in Ohio (I will ship it to you)

There are 2 chances to win.

  1. The first winner will be announced on Saturday Sept. 29th on this Blog (not on Facebook)
  2. The second winner will be announced on Monday October 8th, with the posted pictures from the ‘Blazeman Express’ ride from Columbus to Cincinnati (127 miles of Ohio beauty).

All you need to do is follow a few directions, share a few links, and help drive media traffic and awareness to this blog and to the Iron Horse Challenge page on Facebook.

We may all find we know someone with ALS.  We may find ourselves in a more connected community than we realize.  We may find new reasons to cherish the fact that we can fight, that we need to, and that voices must be raised until we can hear the words: “I am an ALS survivor”

Help me RockOut the ALS Awareness message and we all do more than Hope for a Cure!

Here is a little plug about the speakers…they kind of speak for themselves.

Goal/Zero RockOut rechargeable portable speaker



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19 09 2012

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