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, July 31, 2013

Dear People Invited To The CDC ATSDR ALS Registry Surveillance Annual Meeting Today

If the veil of secrecy is required, please explain that requirement to us.

If the veil of secrecy is desired, please explain that to us, too.

Such secrecy is not healthy for good project governance and is clearly not in HHS's spirit of patient-centricity.

Thank you.

1 comment:

  1. Absolutely mind-bending ... can you imagine, Mr. Suravov of ASTDR wrote me a note saying that they couldn't identify the 3 PALS in advance of the meeting.

    From: Tom Murphy []
    Sent: Friday, July 26, 2013 9:36 PM
    To: 'Muravov, Oleg I. (ATSDR/DTHHS/EHSB)'
    Cc: 'CDC Info Email (CDC)'; 'Horton, D. Kevin (ATSDR/DTHHS/EHSB)'; 'Antao, Vinicius (ATSDR/DTHHS/EHSB)';;;; 'Dempsey, Jay H. (ATSDR/OCOM)';;;;;;;;; 'Kaye, Wendy (ATSDR/DTHHS/EHSB) (CTR)';;;;;; 'Smith, Judith (ATSDR/DTHHS/OD)'
    Subject: RE: ATSDR's Upcoming Annual Amyotrophic Lateral Sclerosis (ALS) Surveillance Meeting
    Importance: High

    Thank you for your responses Dr. Muravov.

    It is absolutely mind-bending to me that only 3 ALS patients will be participants in a meeting that is all about enhancing and evolving the National ALS Registry – it seems to me that our voices would be some of the most important in such a session.

    A few personal perspectives related to your responses (which are in blue bold italics and highlighted in yellow):

    1. The real opportunity for PALS is to influence the decisions and dialog related to the next steps, enhancement and continued evolution of the National ALS Registry & Bioregistry and NOT making sure they spread the information from the meeting among PALS groups they represent so that hopefully, the entire PALS community is well informed about everything that happened with the Registry in the past year and was discussed during this meeting.

    2. Unfortunately, we are not allowed to release identities of these PALS however participants’ names will be available upon release of the meeting report. That means that no PALS will be allowed to provide these 3 folks with additional insights and perspectives (other than their own) prior to a meeting where they are expected to represent the voice of the PALS/Patient community?

    3. We have been having such annual meetings since 2006 and we make their comprehensive reports public by placing them onto the National ALS Registry’s website. You may find them here I’ve read all the reports, contributed to all the surveys and have been registered in the Registry since 12/9/2010 – the day after my diagnosis. I was actually hoping to be a participant in the Bioregistry Pilot – but was not contacted.

    4. We explored opportunities to broadcast this meeting to make it truly public however such technology is not available at the meeting’s facility. The venue does not have an internet connection, conference calling or microphones for folks speaking? This is no longer a “hi-tech” activity in my opinion – just needs to be planned as part of the normal meeting activity. Recommend you talk to the FDA CDER – they have done this very well for the ALS Community.

    5. Currently, we do not have mechanisms to make suggestions from PALS public but we will be working on adding that, very valuable, component in the nearest future and will let you know as soon as it is available. How about if you provide a few email addresses for the responsible and accountable Registry folks and we’ll use that vehicle until you decide on the solution? Can we send our perspectives/suggestions/recommendations to you?


    Tom Murphy