RockOut ALS Awareness Pt. 1

30 09 2012

First I want to thank everyone who rushed in to help share the message over the last week, who linked the music they love, that inspires them.  Who shared a gift of sound, to help a person keep focused when they face moments of adversity, when they feel they are challenged with an obstacle and want to overcome it.  I want to thank you all for drawing us together around that fire so we can all warm ourselves and go back out to face our limitations.

Thank you Tiffany to getting the ball rolling, for shattering the silence and sharing your voice, for you love of life and your contribution.  Thank you Helena for you soul and your spirit, for offering your wisdom from the depth of your own fight and sharing songs that merge your lessons of how fight, survive, and believe.  Thank you Nathan, my escrima/kali brother, for your honesty, support, and humility…but also for your inspiration.  Thank you Susan for your touching music choice and for being such a wonderful supporter, for reaching and touching people – sharing of the Iron Horse Challenge page and finding a network of people who have been affected by this disease within your own circle:  You helped to join new hands to this cause and raise the cry of awareness!It was through all those acts that we helped to bring people together…and that is the spirit of the RockOut ALS Awareness…the idea that through the simple act of sharing music, we can through it, share hope and inspiration and we can bring more voices together.  I hope in that, we can join together the fractures that ALS is responsible for causing.

I will admit, I wasn’t sure if people woud grab onto this idea. I was idealistic that it could use Facebook to spread such an idea, that sharing music could be a fun viral media awareness act.

Months ago, through various Facebook pages, I noted many manifestations of ALS awareness have risen up.

There was the movement to dub the symbol of the ALS struggle with a sunflower.  This I found curious and also personally symbolic as my mother was a lover of the bloom and the plant, of the birds that would feed on it, and its tall presence in the garden was in some way similar to her own, as she stood 5’ll”.

mom gardenThe symbol was also present along the Iron Horse Challenge ride to Dayton, standing as tall, golden fences along the edge of  a number of farms.   I recall one year, on the teams way back, some of the riders/support crew jumped off to the side of the road and took in the site of a field of sunflowers so large that it ignited their imaginations and they captured it as best the could with pictures.

sunflowermanWhy my musing?  Why do I hang on this idea of viral/media inspired social awareness?  I suppose its because many different ideas of ALS awareness are drawn up as we all attempt to honor, symbolize, and remember those we have loved, who have died or suffered from this disease.  We seek to find meaning and find ways of representing it, of fighting back and of celebrating.  Of creating a banner to fight under or a symbol to rally behind.

There have been so many different campaigns that have come and virally spread through Facebook, some living for moments and others finding life for for weeks, months, or longer.  I remember countless images of a candle vigil and then there was a bicep curl flash in the pan (that was even dreamed up into a potential calendar)

bflex als I recall the campaign to make a family dog into a symbol for the movement and the lecacy of its bond with the PALS and thier family.  The list goes on and on and each seems to find a purchase and it heralded by the community, it find a way to shine a light, to renew the commitment of awareness and energy, to keep the memories alive.

There are really so many that rise up.

I have been amazed by how people grab onto them and proliferate them and I think of how many connections that are born of this and were made by this act, virally through just that one site, through Facebook.  I marvel at the number of how many people these actions touched and helped to link our hands together.

Last year, in July of 2011  on the Tri State Trek, many of the ‘ALS Facebook Family’ came together and rode the journey from Boston to NY in a show of nationwide (and even international) unity.  We had all found each other through the web and it was amazing that here we were, meeting each other for the first time and joining in together in a unified way to fight in our common goal:  to defeat this disease and share that legacy with those we love.

tst2011 031tst2011 032

Out of that spirit, was created a flag to act as a banner to lead the charge and this community has taken it all over the country to many different events.  On it is printed the many names that were submitted by these amazing ALS fighters, of the people who they knew, loved, and sought to honor.  It is a list of who they represented, the voices of those who suffered from ALS.  Right now, members of that ‘Facebook ALS family’ are now all enjoying a well deserved rest after the 1st ever Napa Valley ALSTDI 100 mile ride to fight ALS.  Its a moment to savor, to take a pause, and be humbled by the act of so many being unified and joined through a viral/social media.  Who have gone beyond the digital and have shared the sun, the road, the laugher, the challenge.  I hope they all can feel the strength of their gift to each other and to the larger ALS fighting community.  I hope also that they can rest, heal, and recover.


Above all, I hope they all finished safely and were able to share and cherish each others company, to walk away with that gift of fellowship, and find in its embrace the love of those who have suffered and for whom they fight.  The journey they collectively have taken is an act for all of them and for all of us – for anyone who wishes an end to this painful and persistent legacy.

This kind of media voice for ALS is relatively new.

The ability to reach so many people and to bring them together, especially those who are PALS themselves (people with ALS), is incredible.  It allows PALS to  express themselves longer, gives them a chance to share their journey and ask questions of a broader community, to get information, and find hope and a community to support them.

It if wasn’t for this medium of sharing, I wouldn’t have learned of Tim and Kaylan, I wouldn’t have developed such a unique relationship with Jon Blais’s parents, or have found so many people, causes, events, and opportunities to join hands in this war.

My desire is simple.  End this disease.

To do this, I realize it will take the collective hands of many, it will take a show of force that has yet to be fully unleashed.  I  also know that it will be through us all, those of us who decide that collectively, no matter what we do, where we are, or what we have, we can always work to share a voice, a cause, and a movement.

I have also come to realize that the bombardment of so many media posts can also dim and dull a message.

I know that it can cause competition and it can also smother other noble and worthy causes.  It can split the ‘donation dollar’ and stiffle new attempts to create awareness.

It is true also that we can each be so absorbed in our own acts of creating action, of participating in events, and in our own pushing of boundaries and seeking…that we can find ourselves even fighting for our message of ALS awareness to rise above the din of so many daily Facebook events and stories.

It can be a mire of ‘support me’ and it can work against us.

The Truth is: We are only as strong as the link that joins us.

The work can only be lighter if we share the many hands it takes to build this consciouness and awareness of ALS.  We all must be collectively purposeful in not allowing our own voice and our own desires to stop the message from going forward.  We must be mindful and aware of others.

We must help each other forward as each step one of us takes, we all take with them.


There is a constant reminder in my heart to be grateful for any support that I get, for any chance to link hands with people and to find connection in this swirl of celebration, loss, defiance, life, and challenges.

I am so happy that the message got out. I am grateful that in my own way, with the help of the generous people at Goal/Zero, that another act of ALS Awareness could touch a few people and link a few more hands.  All I wanted to do was spread the word, share some music, and maybe reach and raise the spirits of my fellow Napa Valley riders, or maybe some of my local Defeat ALS walkers, or my own IHC supporters.

The RockOut ALS campaign is just the beginning.  There are quite a few Goal/Zero speakers to give away…and so I ask everyone :

please don’t put down the message, please keep sharing the link and adding your own voice with a sharing of music.

We have already helped to bring people together.  Keep RockingOut ALS Awareness and please add your voices.


Next Weekend is the IHC “Blazeman Express” ride from Columbus to Cincinnati, OH….127 miles of Ohio Rail-to-Trail and one of the most amazing experiences of the year…we will ride through autumn beauty and pass through many towns, sharing our message of ALS Awareness and celebrating the act of doing More than hoping for a Cure!

Your support is very needed, because Without you, We go Nowhere!


Please give a hearty congrats to Nathan Curly…. the person who posted the video above and who was the only person whose video was forwarded for its inspirational tune…he is the first to win one of 5 Goal/Zero speakers!  Thank you Nathan for RockingOut ALS Awareness and for your amazing support!


Please keep the RockOut ALS Awareness actions going…the next winner will be announced Friday Oct. 5th and I am increasing the number of chances to win as I have 5 speakers to give away to those who can keep the message moving!



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