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 5, 2012

Look Who's Not Listening

This week a who's-who of leaders and researchers in the fight against ALS is holding a series of global meetings in Chicago.  It's a big deal.  Results of many studies are being unveiled and discussed this week.

Organizations are holding internal meetings.  Business deals are being pitched.  Scientists are networking.  "Promising" theories are being touted.

Two years ago when the meetings were in Orlando, some people with ALS showed up and learned and subsequently helped to fill clinical trials and explain some of the science to their peers throughout the year.

Last year in Sydney, patients were provided with a webcast of an "Ask the Experts" session that answered a few questions and left many more unanswered.  At least there was a minimal webcast provision that acknowledged that there are people with ALS who have skin in this game.

This year in Chicago the "Ask the Experts" session was not webcast.  An estimated 150 healthcare professionals and around a dozen people with ALS attended per a tweet from @alslesturner .  This in a city that is within a couple hundred miles of a huge patient population.

Tweets (hashtag #alssymp ) and sporadic online postings are our only window into the proceedings.

For a person to attend the symposium in person (other than the Ask The Experts session) required a substantial registration fee. There was no discount or waiver for people with ALS.  There was no encouragement for people with ALS to be engaged in person or from afar.

Here are a couple of tweets that we saw from organizations attending yesterday's Allied Professionals' program --

  • @mndaustralia Ruston Australia: Communication Technology: 88% of respondents use internet 'to be disabled without technology is unthinkable'
  • @alstdi Gudjon (Iceland MND Society) "stay in touch with patients, they (we) are the specialists in this condition". 
So technology is king for those dealing with ALS and our organizations recognize the critical role of people with ALS as the specialists in their condition.  Such wisdom uttered from a bunker inside of a Sheraton with no webcasts and no welcoming patient participation seems a little odd, eh?

Every day people with ALS and their loved ones search for the newest and best science.  Every day they encounter challenges that scientists don't even realize.  To have these two groups separated by a "Do Not Disturb" sign is unproductive.  Let them engage with each other directly, please.  Let them learn from each other directly.

Next year, please webcast.  Please encourage people with ALS to be there.  Please allow for their questions to be answered. These are bright people who want to learn and be a part of the solutions.  They are not the unclean masses.  They rely on technology and are the specialists in their condition. 

After all, it's all about the patients, right?

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