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.

Tuesday, August 19, 2014

As We Ride A Marvelous Wave of ALS Awareness...

We simply don't want it to ever end.  What a few weeks it has been.  People are finally saying, "ALS."  Soon we need to get them to talk about ALS.  In the meantime, we'll enjoy this marvelous wave of the #ALSicebucketchallenge or #icebucketchallenge and hear the rich and famous and the rest of us mention ALS in every form of media.

It also proves the point that ALS leaves a broad wake of people who have lost loved ones, friends, neighbors, co-workers, acquaintences, or friends-of-friends to the disease.  Those people are all being called by the #ALSicebucketchallenge .  ALS organizations have not engaged them well in the past, but this is proof that we need to provide ways for them to help make noise about an outrageous disease.

This wake was built by the fact that every day over 350 people die from ALS globally.  Every day.  Yesterday, today and, yes, tomorrow.  This goes on relentlessly, seven days a week.  No weekends off for ALS.  The tragic destruction persists as we bask in the ice glory.  We must not forget.  We must not break our arms patting ourselves on the back for a social media phenomenon.   Part of the explanation is the huge wake of destruction that ALS has left over the decades.

We must make a substantial change in the fight against ALS so that this disease is finally stopped.

There is much to do, and it's a blessing to know that so many powerful and influential people care.

Thanks to all.

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p.s.  There are two important action items that unfortunately have been buried by the ice fun.  If you can help via your personal action and social media reach, it would be appreciated.

1.  There is a Medicare policy issue that has a terrible impact on people with ALS who need devices to help them communicate.  Please read this link and consider and act, and please spread the word to your social media reach.

2. There is a study enrolling that needs volunteers with ALS who are able to get to Boston.  Information is at this link.  Once again, please help spread the information.

Thank you.

1 comment:

  1. Fully agree it's time to educate about ALS. Here's my blog post + Icebucketchallenge video that tries to do just that. - would appreciate any feedback. http://www.redacre.com/insights/160814164/als-ice-bucket-challenge-accepted

    ReplyDelete