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.

Friday, June 13, 2014

No, Everything Is Not Fine

The concerns about the Lou Gehrig bobbleheads have been around for years.  ALS neck weakness is one of the most difficult parts of this stinking disease.

In this, a special year to remember Lou and to educate people about ALS, it's time to address the problem seriously.

A few weeks ago on the ALS forum at www.patientslikeme.com, a woman with ALS posted her comments about a fundraising message she had just received promoting a Lou Gehrig bobblehead as a premium.  She was shocked.  Her final words in the posting were, "Does it come with a neck brace?"  More patients spoke up. No response.

Then on the ALS Association of Greater New York facebook wall where the fundraising promotion was posted, a number of people spoke up, too.  No response.

Then on Jonathan Eig's facebook wall and twitter feed, he asked a thoughtful question about these bobbleheads being offensive.  Good discourse.  Not 100 percent agreement, but the overwhelming sentiment among those who have dealt with ALS is that these are offensive.

And during this whole time this blog site has had an interesting array of daily traffic watching the postings regarding the bobbleheads.  Isn't anyone going to take some constructive action?

Everything is not fine.  Those who who hold the responsibility to stop the promotion of these little statues need to step up, but first they need to take off the sound-deadening earmuffs and listen.

Please bury the bobbleheads.  You know they are simply wrong.  You know that this is an opportunity to educate people about ALS and about what happens to people like Lou Gehrig after they say their courageous farewells.

I don't know what Eleanor Gehrig would say, but I had a loved one who struggled terribly with ALS neck weakness.  Imagine your heavy head resting down on your chest and your neck being completely powerless.  That's ALS.  That's why these trinkets are wrong.  Then again, perhaps I do have an idea of what Eleanor Gehrig would say.

No, everything is not fine right now. Thanks for listening.






6 comments:

  1. Promotion (along with all comments regarding it) appears to have been removed from ALSA of Greater New York's facebook wall. Too bad they didn't address or acknowledge the concerns that had been posted there in some way.

    Promotion still appears on home page at http://www.alsny.org/ .

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    1. Some of this could be avoided by stopping the entity of Lou whoever baseball player along time ago.....Meanwhile thousands of other wonderful people have died.See.... bobbleheads are a part of trinkets for sports enthusiasts!!The stricken fatal disease is called Amyotrophic Lateral Sclerosis (ALS).GET IT RIGHT!!! Stop!!! marketing this with sports

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  2. Oh good grief, what isn't offensive these days? Now there's crybabies about bobbleheads.

    Get over it people, the Yankees are promoting Lou Gehrig the ballplayer, not the Lou Gehrig the disease.

    If anyone should have a say about the bobblehead, it should be the Gehrig Family.

    Baseball Fan

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    1. "... the Yankees are promoting Lou Gehrig the ballplayer, not the Lou Gehrig the disease. "

      Quite simply, they could have done both.

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    2. I thought the phrase "Lou Gehrig the disease" sounded kind of tacky so I didn't include it. Nothing woring with highlighting the ravages of it, though.

      Your webpage came from Ballpark Digest. Watch the MLB video. It almost brought tears to me - http://ballparkdigest.com/201407027445/major-league-baseball/news/mlb-to-honor-lou-gehrig-this-weekend

      Baseball Fan

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  3. A little thoughtful consideration could have avoided the use of something like bobble heads that might be offensive to those who can no longer support their heads. My husband had ALS and I’m sure he would want no reminders of what this cruel disease does.

    I would also be curious as to what the Gehrig family would say about this issue. Eleanor was a huge advocate for ALS and I think I know what she may have said.

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