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    #31
    Originally posted by lunasicc42 View Post
    UGH...phase 1/2 clinical trial beginning early 2020
    Is the UGH because we all know it will be 2022 !

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      #32
      Originally posted by niallel View Post
      Is the UGH because we all know it will be 2022 !
      even 2020 is too long for my liking... Even though I understand the reality of the situation, I still want it YESTERDAY
      "That's not smog! It's SMUG!! " - randy marsh, southpark

      "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


      2010 SCINet Clinical Trial Support Squad Member
      Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

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        #33
        Originally posted by lunasicc42 View Post
        even 2020 is too long for my liking... Even though I understand the reality of the situation, I still want it YESTERDAY
        Same.

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          #34
          I'm strongly in favor of far more liberal compassionate use laws.
          T3 complete since Sept 2015.

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            #35
            Originally posted by Mize View Post
            I'm strongly in favor of far more liberal compassionate use laws.
            Trump signed a national “compassionate use” law. Can SCI be considered a terminal condition?

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              #36
              The problem with the compassionate use type laws is that it requires the organisation with the treatment to agree to it.

              When its a company who has the solution they stay away from doing this. They have their reasons, but frankly the reasons I've heard are selfish reasons.

              It was great to hear that Wise's trial will offer early access. That shows they want to get cures into patients as soon as possible, and are more concerned with helping us than making money.

              Comment


                #37
                Originally posted by nrf View Post
                Trump signed a national “compassionate use” law. Can SCI be considered a terminal condition?

                From what ive read so far, and honestly expected... I couldn't find any literature that "spinal cord injury " exactly falls under the umbrella of the compassionate use law. Like ideally I was looking for an actual list of conditions that would apply but I never found that
                "That's not smog! It's SMUG!! " - randy marsh, southpark

                "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                2010 SCINet Clinical Trial Support Squad Member
                Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

                Comment


                  #38
                  There are no therapies for SCI. Therefore (we are told) phase II therapies that are safe and effective will be eligible for Expanded Compassionate Use.

                  Comment


                    #39
                    Not a political view but combining President Trump's

                    1: Love and respect to the injured and non-injured veterans that served the country.

                    2: Cut unnecessary regulations or policies that affect job creation, projects and innovations.

                    3: Increase the economy and intellect property with local manufactured products/produce/ keeping the made in the USA proud slogan

                    Maybe it's worth getting his attention about our situation? I've read several times here that the previous US Admins had done cuts and gave red lights to several research fields... 2020 elections are coming, maybe a good opportunity to make a good argument or promise to the upcoming presidential debates?

                    Or we as a community join up in a great number in groups in different parts of the country/world in a specific time/date making news so he and opponents can respond to?


                    Tring to find ideas to cut the unnecessary BS to speed up things... any ideas?

                    How to cut unnecessary regulations that prevent (if any) SCI research to humans. (hey its been decades of so called 'breakthroughs' that could benefit humans...

                    Again, my point of view is from me a non political SCI, anyone triggered are free to pm me to avoid derailment of the thread.
                    Last edited by Moe; 16 Aug 2018, 4:01 PM.
                    "Talk without the support of action means nothing..."
                    ― DaShanne Stokes

                    ***Unite(D) to Fight Paralyses***

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                      #40
                      This is what the original premise of u2fp was. It’s much more on the research side now.
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                        #41
                        Originally posted by jsilver View Post
                        Dear Lunasicc42, Lynnifer and others. I have not posted in a very long time but I do read Care Cure on occasion. Thanks to Grammy and U2FP I see that you have learned about the founding of NervGen Pharma. These are going to be very exciting times, indeed, with a goal to bring our regeneration strategies to people as rapidly as possible. The primary focus for sure is going to be spinal cord injury.
                        It's wonderful news that NervGen Pharma has picked up the peptide strategy for continued development of a regenerative SCI treatment. Indeed these are exciting times! Best of luck moving forward!
                        http://spinalcordresearchandadvocacy.wordpress.com/

                        Comment


                          #42
                          Sure we'll just sit down and wait. No rush, please take your time... Reuniting to impact research was a dumb idea anyways....
                          "Talk without the support of action means nothing..."
                          ― DaShanne Stokes

                          ***Unite(D) to Fight Paralyses***

                          Comment


                            #43
                            Originally posted by lynnifer View Post
                            This is what the original premise of u2fp was. It?s much more on the research side now.
                            I didn't knew that, I'm only 8yrs post. Its a shame if its true, I find that its a good time to get reunited to move thing forward and not just wait for things to happen with sucking up and worshiping. Something Terry Fox would do...
                            Last edited by Jim; 17 Aug 2018, 9:04 PM. Reason: edited out off topic
                            "Talk without the support of action means nothing..."
                            ― DaShanne Stokes

                            ***Unite(D) to Fight Paralyses***

                            Comment


                              #44
                              Originally posted by Moe View Post
                              Yes my prick is still functional, no problem there, thanks for reminding me.

                              I didn't knew that, I'm only 8yrs post. Its a shame if its true, I find that its a good time to get reunited to move thing forward and not just wait for things to happen with sucking up and worshiping. Something Terry Fox would do...
                              Terry Fox and the Marathon of Hope for cancer:

                              Fox's actions increased the visibility of people with disabilities,
                              [89][90] and in addition influenced the attitudes of those with disabilities, by showing them disability portrayed in a positive light.[89]Rick Hansen commented that the run challenged society to focus on ability rather than disability. "What was perceived as a limitation became a great opportunity. People with disabilities started looking at things differently. They came away with huge pride", he wrote.[91]
                              http://spinalcordresearchandadvocacy.wordpress.com/

                              Comment


                                #45
                                What's preventing sci's to reunite for a marathon of hope for a cure, something to fire up the media, lift out bans, remove unnecessary waiting time, regulations, etc.... is it true that it was UTFP's goal initially? unite sci's as a whole toward such visibility? Just asking. I find right now is a great time to happen. Sitting like ducks and cheering rockstars doesn't seem to work so far.

                                How about including a huge fleet of sci's on wheelchairs at the next Macy's parade? no violence, nice and simple, message givin, national or worldwide media reporting.... Done. not rocket science.

                                The Parade is in 3 months in NYC, imagine a huge convoy of wheelchairs and decorated trailers full of sci's waving at everybody... the world watching, we'd be on tv....
                                The disabled have equal rights to be included as far as I know, it calls for a potential proposal to the mayor of nyc and event organizers.

                                I'm loosing track of what local sci organizations and foundations are really doing to help besides collecting donations.
                                Last edited by Moe; 17 Aug 2018, 6:48 PM.
                                "Talk without the support of action means nothing..."
                                ― DaShanne Stokes

                                ***Unite(D) to Fight Paralyses***

                                Comment

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