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, June 29, 2013

We Need More Idea-Thons To Defeat ALS

We're so good at walk-a-thons.  Let's get really good at idea-thons.

The idea struck me during the consensus-building final portion of the Team Gleason ALS Research Summit yesterday. www.teamgleason.org/summit

It's harder to do online than they did at the tables, face-to-face, but I think some clever people could come up with a good online format that should include everyone -- rocket scientists down to low-i.q. bloggers.

This would be like speed-dating for ideas.  Get some sparks of creativity out there.  Capture them.  See if they generate other sparks or plop.  Move on.

In an online, chat-like format:

  • Pick a general topic
  • Have someone float an idea
  • People who want to discuss stay in the chat and start chatting
  • People who don't want to discuss or who don't like the idea stay on the sideline
  • Have at it for fifteen minutes
  • Float another idea...

Eventually the idea bag is full and it's time to deliver (thanks, Dreamfinder and Figment), but in the fight against ALS, we've not been very good at the new ideas. The more ideas you have today, the more ideas you'll have tomorrow.

Yesterday we had sparks of creativity and the discussions were all-inclusive. That's good and that's different.


2 comments:

  1. What we really need is more DO - A - THONS

    • I think we need to surround ourselves with folks that possess tremendous skill at effecting change within the ALS Community. Good ideas today are cheap, a dime a dozen. Brilliant concepts and practices are disseminated with stunning speed today. Still in short supply though, is the ability to effect change, to get things implemented, to make things happen. This is what I am waiting for – more of these type of folks to come out of the closets and smoke filled rooms.

    • This was a great opportunity to get something done – but I never got the feel that anyone in the Summit wanted to VOLUNTEER, take the ball and run with it.

    • It is always tremendous to get folks together for discussions like this and sharing of ideas and information … especially in this community where it seems most of the academics, clinicians, researchers and scientists don’t seem to openly share and continually collaborate toward shared objectives.

    • It seemed to me that all of the discussion topics already came up and were recognized at the 2/25 Public Hearing and at the ALSA Advocacy Day … we keep talking about the same things over and over … but who is going to actually DO SOMETHING? Besides Merit Cudkowicz, I didn’t hear anyone say "I volunteer to take on this idea now, and I will report back to all in (date)".

    • This event made me think once again that what this community needs is someone who is in charge or an Executive Steering Board that manages and prioritizes the many millions of $ and “projects” that are donated or come from Grants or come from Government. There is no one in charge in this community so there is no one to DIRECT efficiency, no redundancy, priorities, sharing, partnering, etc. I’m not a communist but this is a situation that really needs someone or something IN CHARGE. I don’t think there are any shared objectives that everyone works TOGETHER on – everyone seems to duplicate efforts for their own individual gain.

    • I believe that in this 140 year ALS challenge the old adage – TOGETHER EVERYONE ACHIEVES MORE (TEAM) -- is very appropriate.

    • These types of events involving academics, scientists and researchers always result in “good discussions” – these topics (and discussions) at the Summit seemed no different to me than the topics and the discussions that we had on 2/25 at the FDA – it was like a rerun for me and I think all of the things I heard (via the live feed) were the same we came up with post 2/25 public hearing.

    • The real question is what are WE ALL going to actually DO (Objective and Performance based) and when are we going to start MEASURING our progress … we keep discussing the same issues with Academics, Scientists and Researchers but WHERE ARE THE DOERS with the capability to bring some of these ideas into “production”? They didn’t seem to be at this Summit.

    • I kept thinking that someone needs to stand up and ask these Panel Members what THEY are actually DOING personally to move some of these “clever ideas” and “answers” they are giving into production/use.



    • I was looking for the people, organizations and results from this Summit that would effect change, get things implemented and make things happen and I didn’t see much of that on the live feed of the event --- perhaps it happened “behind the scenes” just as the planning of the Summit did.

    • I will be looking for the documented and measurable outcomes that will effect change, get things implemented and make things happen.

    • I think this community should stay on track together and stick with the priorities articulated by most everyone at the FDA Public Hearing (see the attached documents as examples).

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  2. Point well taken on the DO-athons!

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