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.

Monday, August 13, 2012

It's Time For Some New Scientific Tables

In early December a large global contingent of professionals involved in the fight against ALS will hold their annual meetings in Chicago.  There are three related conferences -- one for an organization of organizations, one for allied health professionals, and one for researchers.

Football programs and golf tournaments often feature a celebrity athlete at each table for those attending banquets.  How about a some people with ALS at the tables during the many meals at these meetings?  They are our celebrity heroes.  Let's make it real, and perhaps a scientist who has been spending years on a theory will benefit from learning how to work the suction machine or feeding tube.  Food always stimulates some interesting conversation, and perhaps these people should converse more.  Oh, people with ALS often speak via technology, but they can and deserve to be heard.

We talk about breaking down barriers among patients and healthcare professionals and research scientists.  They need to speak to each other.  They need to listen to each other.  The all need a place at "the table."

Perhaps there will be some tables in Chicago where the process can start.


Below are some links to information for the meetings.  It's thoroughly confusing and not particularly welcoming, but perhaps that's all the more sign that it's time for people with their own skin in this game at the table.

http://www.mndassociation.org/research/International+Symposium/Symposium+Registration+page

https://www.mndcommunity.org/sslpage.aspx?pid=416

http://www.lesturnerals.org/files/3113/4401/1886/Alliance_reg_form_2012_Chicago_fillable.pdf




1 comment:

  1. Confirmed by @mndresearch ... PALS pay the full registration fee for the research symposium... £450 (a little over $700) until Oct. 15 when the price goes up.

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