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.

Saturday, May 11, 2013

Are You Reading This On The Bad Internet Or On The Good Internet?

Yesterday at the ALS Association's Advocacy Conference, Dr. Richard Bedlack presented on "ALS Facts and Myths."  I think highly of Dr. B.  He is bright, knowledgeable, accessible, energetic, creative, and pleasant -- a rare package of traits in a neurologist in my experience.  He also provides a valuable source of information for those dealing with ALS with his ALS Untangled project, which, by the way, is available on the internet at www.alsuntangled.com .

During the webstream of his presentation, we heard Dr. B cover some "alternative" therapies that people with ALS might encounter, and he spoke of the scientific fact and (mostly) myth associated with them.  Most were found on the internet.  Many were so laughable that they drew lots of loud snickers from the audience.  Oh, that internet is so bad.

The continual laughing at the internet from the audience seemed odd to me.  Many (if not most) of those people in the audience were staff or fundraisers for our largest ALS organization that has used the internet to fuel a huge fundraising success.  The guffaws came from an audience that included paid tweeters using social media to promote the ALSA advocacy conference experience.  And there were contractors webstreaming that very session. Oh, that internet is good.

Internet tools are powerful.  With any medium, content can be dependable or not.  The internet provides us unprecedented opportunities for experts and organizations to help curate and contribute content.  The internet is the most accessible milieu for people with ALS and their caregivers.

The internet isn't the problem.  If you laughed a whole lot and rolled your eyes when Dr. B spoke of the internet, then perhaps your lack of online engagement beyond fundraising and organizational promotion is the problem.

3 comments:

  1. I was in the audience as Dr. B presented his X-Files-inspired talk. I am neither staff, nor a fundraiser for ALSA. I am a caregiver of my 40-year old sister. I was a caregiver 20+ years ago of my, now deceased, mother. ALS is anything but funny. So, to a room full of PALS, caregivers, & loved ones, a chuckle here & there is quite welcomed. We love the internet & scour it whenever time permits. However, time is one thing that those fighting ALS do not have in abundance.

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  2. Hi. Is there a link where I can read or listen to Dr. Bedlack's webstream presentation? I could not find it on the internet. I was curious as to which therapies were found to be "so laughable". Any on the "open reviews" of ALS untangled?

    Recently, I'm learning a bit more about my family history. My parent, who I thought had SALS, now may have had FALS. That is why I am interested.

    Thanks.

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  3. Here's a link to the Bedlack presentation --

    https://www.facebook.com/alsassociation?sk=app_142371818162&app_data

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