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.

Friday, December 17, 2010

Please Take 15 Minutes And Chime In

One of the comments on the posting regarding the ALSA Advocacy Listening Tour for 2011 hit the nail on the head -- "If they do ask for your input- what IS YOUR input? What do you think is of utmost importance?"

Here's your chance to speak up and share your ideas. It will take around 15 minutes to complete the survey. We'll summarize the results and will share them with the advocacy departments at ALSA, ALS TDI, and the MDA... and with all of you here. Please click the link below, chime in, and make a difference!

ALS Advocacy Survey

12 comments:

  1. Send a letter to everyone on the planet to say that there is a 1:1000 lifetime chance of becoming totally (eventually) paralysed unless they are willing to contribute to ALS/MND research now.

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  2. Mechanics of the survey --
    The only required question is the one about whether you are a PALS, CALS, etc. The others are all optional; however, the more responses, the more meaningful the results. Once you answer the required question on the first survey page, you may navigate ahead and back at will as you complete the survey. Thanks.

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  3. Great Survey. Thank you for allowing us to give our point of view. I hope to see National ALS Public Service Ads on all main media channel and cable channels in 2011.

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  4. The problem facing ALS patients is not a lack of awareness or lack of funding for discovery research; it is that its disease-specific foundation, ALSA, is an utter no-show on initiatives to bring existing, potentially effective treatments into clinical trial. Why are they not supporting TDI and PCUT, two smaller organizations that actually are dedicated to uncovering life-extending ALS treatment within the lifetimes of today's sufferers.

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  5. That was an excellent survey. I am thankful to have the chance to take part.

    **BUT, Iplex is not an FDA issue. I am involved in the work to restore this drug's path to clinical trial, and I ask you to write something like this:

    PCUT expects accommodative regulatory treatment if it can restart the drug’s supply and trial program.

    To promote the availability of potentially effective treatment options in the near term, ALSA needs to partner with PCUT, which has an option-model to financially de-risk clinical development of treatment of confounding diseases like ALS.

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  6. Jess Rabourn, I'm not an Iplex-optimist as you, but I agree thoroughly that it is not an FDA issue. That is where it fell in the ALSA listening tour document. Thanks for participating.

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  7. One doesn't need to be an optimist to want to maximize the the number of safe and potentially effective treatments in ALS clinical trials.

    Visibility and foundational support will make that happen.

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  8. Can you keep us posted on the numbers taking the survey?

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  9. As of this morning we have 65 people who completed the whole survey. There are also 35 who did "partial" submissions. That latter category includes many who skipped just few questions and we'll be sure to include them in the results.

    So... 100 and we're still hoping that more people who are interested in ALS will speak up.

    So far we have a good mix of PALS, CALS, and friends to the cause. Two have identified themselves as employees of ALS 501c3s and we welcome their thoughts.

    We'll be able to filter the results to see differences in perspectives. Here's what PALS said... here's what CALS said... etc.

    I think that we'll have some interesting statistics and commentary for ALSA, ALS TDI, and MDA as they look ahead to 2011.

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  10. More submissions were entered yesterday. We won't have time to assemble the results for about a week, so if you have not chimed in, please do so. There are some very good comments and some interesting themes coming through. Best holiday wishes to all and special prayers for all dealing with ALS.

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  11. Thanks to all who took the time to participate. The comments had some common themes and interesting ideas which I hope will spark some new action in 2011. Results are on the thread at
    http://als-advocacy.blogspot.com/2011/01/als-advocacy-survey-results-are.html

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