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02-01-2012, 08:02 PM
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#1 (permalink)
| | Very Helpful Member Registered Member Join Date: 2011 City: Colorado State: CO Country: US Diagnosed: 10/2010
Posts: 1,199
|  Please sign our petition if you haven't already!
We need 10,000 signatures to be heard! Please spread the word and if you haven't signed yet, will you please? We've a long way to go and not much time.
Thank you!
** removed email/address harvesting **
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02-04-2012, 11:55 AM
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#2 (permalink)
| | Very Helpful Member Registered Member Join Date: 2011 City: Colorado State: CO Country: US Diagnosed: 10/2010
Posts: 1,199
| Re: Please sign our petition if you haven't already!
We're still far far away from our goal. Please, will you sing this petition if you haven't already? Please spread this around to your friends and acquaintances! We need to push for this so we can live Tao see a cure!
Thank you for your help
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02-07-2012, 08:34 PM
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#3 (permalink)
| | New Member (Say Hi) Registered Member Join Date: 2011 City: emerald isle State: nc Country: USA Diagnosed: 10/2011
Posts: 30
| Re: Please sign our petition if you haven't already!
Now close to 4,000. need everyone's support to have our voices heard.
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02-09-2012, 09:37 PM
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#4 (permalink)
| | New Member (Say Hi) Registered Member Join Date: 2011 City: Chester State: VA Country: US Diagnosed: 04/2008
Posts: 56
| Re: Please sign our petition if you haven't already!
It would be great if someone could mention this petition on the Clinical trial and advocacy Webinar on Monday 13th at 2PM EST. Dr. Bedlack used to be my ALS/Neurologist.
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02-10-2012, 10:15 AM
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#5 (permalink)
| | New Member (Say Hi) Registered Member Join Date: 2012 City: Nova Pazova State: Serbia Country: SRB Diagnosed: 04/2006
Posts: 22
| Re: Please sign our petition if you haven't already!
Best regards from Serbia !  | |
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02-10-2012, 10:24 AM
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#6 (permalink)
| | New Member (Say Hi) Registered Member Join Date: 2012 City: Raleigh State: North Carolina Country: US Diagnosed: 10/2011
Posts: 9
| Re: Please sign our petition if you haven't already!
Please sign and drop by and visit us on Facebook too! There is a group page and "like" page. Let's keep this thread bumped up high so everyone sees it!  | |
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02-10-2012, 11:04 AM
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#7 (permalink)
| | Very Helpful Member Registered Member Join Date: 2011 City: Colorado State: CO Country: US Diagnosed: 10/2010
Posts: 1,199
| Re: Please sign our petition if you haven't already!
Welcome Riko! | |
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02-10-2012, 11:16 AM
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#8 (permalink)
| | Very Helpful Member Registered Member Join Date: 2011 City: Colorado State: CO Country: US Diagnosed: 10/2010
Posts: 1,199
| Re: Please sign our petition if you haven't already!
Itbeauti, There was a webinar with Dr. Bedlack as well as Dr. Stevan Parrin February 6th in which several other people here and I participated. Several of us wrote our questions in the chat box regarding Compassionate Drug Use for PALS that went unanswered. At the question answer portion someone verbaly asked the question and we were told by these two Dr.s that they in good concience couldn't do it. I understand that if we can get enough signatures, and reptuable ALS Neurologists to dispense the meds, that there may be a way we can get access. As you know, time is of the essence.
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02-10-2012, 12:28 PM
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#9 (permalink)
| | Member Registered Member Join Date: 2011 City: San Ramon State: Ca Country: US Diagnosed: 10/2011
Posts: 132
| Re: Please sign our petition if you haven't already!
You know, I've been trying to sign this for months, and every time, it tells me there is an error on the page and to try back later. Is there something I'm missing?
Thanks!
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02-10-2012, 01:02 PM
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#10 (permalink)
| | Very Helpful Member Registered Member Join Date: 2011 City: Colorado State: CO Country: US Diagnosed: 10/2010
Posts: 1,199
| Re: Please sign our petition if you haven't already!
Cub, if you go to F ac e b ook and go to the ALS Treat Us Now page as Mommy2boysNC asks you can find a good l ink there. Keep trying! Thank you for your help! | |
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02-10-2012, 06:30 PM
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#11 (permalink)
| | New Member (Say Hi) Registered Member Join Date: 2011 City: Groveland State: Florida Country: US Diagnosed: 05/2009
Posts: 60
| Re: Please sign our petition if you haven't already!
Posted on my facebook page!
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02-11-2012, 04:13 AM
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#12 (permalink)
| | New Member (Say Hi) Registered Member Join Date: 2012 City: Nova Pazova State: Serbia Country: SRB Diagnosed: 04/2006
Posts: 22
| Re: Please sign our petition if you haven't already!
Posted on my facebook page and the Serbian site on ALS  Peticija | |
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02-11-2012, 07:07 PM
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#13 (permalink)
| | Member Registered Member Join Date: 2012 City: Mid State: Michigan Country: US Diagnosed: 00/0000
Posts: 235
| Re: Please sign our petition if you haven't already!
Done - and posted on my FB page!
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02-11-2012, 07:52 PM
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#14 (permalink)
| | New Member (Say Hi) Registered Member Join Date: 2011 City: Stanhope State: New Jersey Country: US Diagnosed: 08/2010
Posts: 19
| Re: Please sign our petition if you haven't already!
Glad I saw your post, signed and posted on my facebook page.....<3
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02-11-2012, 09:06 PM
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#15 (permalink)
| | New Member (Say Hi) Registered Member Join Date: 2011 City: emerald isle State: nc Country: USA Diagnosed: 10/2011
Posts: 30
| Re: Please sign our petition if you haven't already!
It is not enough to simply sign the petition, welcome as that is. We need many more pro-active volunteers. If you have a few hours to spare please tell us.
Thank you.
Ed
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