ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, December 31, 2014

The "Me" in SoMe isn't Me

It's the last day of of an incredible year for ALS in the social media.

So, let's think about what we have learned about the power of social media and the fight against ALS.  What's the first thing that comes to your mind?  Really, what's the first thing that comes to your mind?

Awareness?
Listening?
Engagement?
Ideas?
Thoughts?
Information?
Creativity?
Accessibility?
Questions?
Answers?
Spontaneity?
Opinions?
Diversity?
Sharing?
Transparency?
Efficiency?
Collaboration?

Naw, you were thinking Fundraising, weren't you?

Has the idea of buckets of money made us myopic about the higher usefulness of social media to defeat ALS?

Has brand management overshadowed the power of ideas and interaction and accessibility that social media provide to a diverse population with physical challenges?

It shouldn't be all about the brand and fundraising.  It's not all about the organizational "Me."  It's about a very important "You" -- people with ALS and their caregivers.

Yesterday an apparently helpful tweet from an organization offered people newly diagnosed with ALS a link to information.  Upon clicking they were greeted with the year-end popup to donate.  Whoops.

Paul Wicks of PatientsLikeMe recently wrote an interesting piece on the Ice Bucket Challenge and ALS -- http://www.researchgate.net/publication/268879452_The_ALS_Ice_Bucket_Challenge_-_Can_a_splash_of_water_reinvigorate_a_field

There's a lot to consider there.  The idea of organizational curation of Wikipedia information about ALS jumped out at me.  What a way to step forward and help maintain some quality in information that people find every day!  Some organizations don't have time?  Have we completely lost our vision?  You can be darned sure they would have time to take care of a Wikipedia entry on the organization itself.

The fight against ALS needs to turn itself inside-out.  It's simply going to take a major attitude change about the "Me" in SoMe.












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