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.

Thursday, December 6, 2012

"Watch Out! She's Gonna Blow."

It's a classic television line from Murphy Brown.  It fits my knee-jerk reaction to some reports I read regarding something presented at #alssymp -- the big International ALS MND Symposium.

There seemed to be some speaker criticism of people with ALS yesterday because of the low percentages who enroll in clinical trials.

My knee-jerk reaction to that was to want to ask the speaker to please look around the room.  Perhaps the ALS powers-that-be forget to invite people with ALS to participate in clinical trials the same way they forgot to invite them to be a part of the fabric of this symposium.

Surely clinical trial enrollment is a serious problem, but it will never be solved until ALS authorities do some introspection with the help of those people with ALS who experience inconsistent and mixed messaging regarding clinical trials.

But let's go back to my knee-jerk reaction.  It was based on a tweet and on a blog summary of what the speaker said.  I certainly appreciate the tweets and reports.  They are our only window into the proceedings; however, I really wish I had heard the exact words of the speaker... and the context.  The reports we get online come through the lens of a writer (who is often hurriedly struggling to stuff a thought into 140 characters) who works for a stakeholder.

Thanks very much to those who are providing us with their peeks into the proceedings.  Next year I hope that those peeks and insights will continue, along with some options to experience the words and contexts directly ourselves (and ask some questions).  It will make a much more robust, dynamic picture of the state of ALS research for all stakeholders.

In the meantime, if you are on twitter, I encourage you to follow @paullikeme today.  He has been outstanding in giving us a glimpse into #alssymp .






2 comments:

  1. The reports we get after the conference from MNDA, ALSA, MDA, ALSTDI, etc will also come through their lenses. We need to be enabled and encouraged to interact directly with researchers. There is no need for all information to be brokered and translated and interpreted before patients and families are allowed to partake.

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  2. I have repeatedly been told that I am not eligible to enter studies for various reasons, including that I live in a rural area.

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