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    Ny Sci

    I do not post often in this section some not sure if this information is already out there.

    New York State has a Spinal Cord Injury Research Board. Governor Spitzer has ordered that all meetings be webcasted. They recently had a symposium at 7 World Trade Center.


    look at 1/15


    http://www.health.state.ny.us/events/webcasts/archive/
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

    #2
    thanks liz321,

    it was a good watch, gives a good look at what many people are doing and the differant frustrations on many sides,

    did you watch it
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

    Comment


      #3
      Interesting meeting! Several people were offering up the argument that so much money goes into basic research with rats and mice, however the funding and push never comes to "human" trials that will ever be put to good use! Dr Wise Young was mentioned as an advocate and spokesperson for the funding to be pushed beyond the tons of grants that are continiously awarded and never does a thing toward solving the problem of SCI and getting people out of wheelchairs. There were several folks there that hit the nail on the head. I applaud them for their insight and insistence on going beyond the same old waste of money and time. I hope the funding boards start listening to the people pushing for core collaboration from the researchers that have already been given thousands of dollars for the basic research, but haven't pushed beyond the fact that the knowledge sits stagnate and unused. Their money should be spent on more symposiums for the researchers to decide how best to mesh their expertise for fruitful human clinical trials. There's a ton of bricks and mortar...lets get the architects drawing up the plans and get the contractor started building...

      Thanks for the link! It was great to watch! In fact I went to the index and also watched the January meetings on funding stem cell research and also the ethics meeting on stem cells with New York State funding.
      http://spinalcordresearchandadvocacy.wordpress.com/

      Comment


        #4
        I do not wish to run a monopoly on this thread...but I would like a response from Dr. Wise concerning a few issues that came up during the annual New York Spinal Cord Injury Research Board Annual Meeting.

        1. 1,500 letters were sent out to possible sci participants through various doctors and medical centers with only a handful of responses concerning participation, research and clinical trials. Some of the board members got nervous when there was mention of a "registery" for imput from SCI folks. I gathered it was privacy related. In so many ways, it appears the board doesn't get any feedback from SCI folks. So the endless circle continues.
        I wonder if the SCI community should be much more involved in contacting the board members that give grants in the first place rather than so much time being spent on chasing politicians and fighting for funding through the NIH? It appears there could be more pressure and communication coming from the SCI community directly to the very boards that hand out these huge grants within the various "state" budgets...is this correct? I just thought I was seeing lots of floundering for direction and various members wanting the funding to finally do some good. Should we have a group contacting these board members with feedback from the SCI community?
        (Incidentally, only ONE sci person was there. Probably the number desiginated during the formation of the board).

        2. With tons of money being awarded by these committees to various research groups and universities for more brick and mortar research on mice...why is there not a major push for all of the recipients to collaborate their findings and put the knowledge to bedside use? What group is ultimately responsible (if any) to actually do something with the results? It appears they could fund these 5 year mini basic science research projects worth millions from here to eternity but never put a cure together. I'm like Leo, I was frustrated just watching them trying to figure out what to do!!! I'm glad the webcast is now law for these meetings! I still can't quite believe what I saw! I'm glad this is on the web so others can see first hand!!! What was your take on this webcasted meeting?
        http://spinalcordresearchandadvocacy.wordpress.com/

        Comment


          #5
          Hi Grammy,

          I would urge other frequent cure posters to watch this, cuz it gives great insight to many problems, percieved or true.

          Grammy there are two SCI on this board, Paul and Brooke I think. Also if you caught where the new director Bonnie has just been there a year, i gather things were not so organized before, but then that takes staff and they said they are hiring.

          It can be frustrating serving, I'm sure Paul is like me where we would say lets just cut a check to Han's and move. but in state politics.

          it was great to see dr. fiblin rip into them, it made me think of what i'm doing wrong as a board member here.

          i love this webcast idea, maybe Maryland and the other big players will get online, Caifornia, eh

          i intend to write the NY group and thank them

          the more symposium idea was great, we got to get people together

          more later
          http://justadollarplease.org/

          2010 SCINet Clinical Trial Support Squad Member

          "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

          .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

          Comment


            #6
            Leo, I'm glad there are 2 sci on the board! I also love the webcast idea so we can actually stay current and see the funding and research decisions being made and put into action. It is interesting to watch them implement the plan. (I just wish the symposium idea was funded to the max!). I do believe we need our very best to collaborate their expertise and experience. I'd be throwing the 3 multi-million dollar grants to the 3 best special teams. Without it, I'm afraid we'll continue to just dilly dally along and waste valuable time and resources. I loved the 3 grants for 3 different teams idea. Guess who'd I'd solicit to be on my team for bringing the research to bedside! My team would be #1 and have a stadium packed full of fans...

            It's a good thing I'm not on the board...guaranteed I'da been up on the table top doin my share of ripin into em. They should have done webcast long ago. This is super and I'd like to see more of the open meetings like this. It does make you wonder what we should be doing to assist with their efforts!!!!!!!!!! I do not wish to criticize them at all. Indeed serving is tough and very thankless at times. It will be fun to watch as they grow into their new positions and push forward. I will also be writing the board with my gratitude and praise for webcasting (along with my unsolicited opinions of course).
            http://spinalcordresearchandadvocacy.wordpress.com/

            Comment


              #7
              The Maryland meeting dates are published in the Maryland Register. All meetings are by law open except for voting. Our 11 member board includes 2 doctors with expertise in SCI from both Johns Hopkins and the University of Maryland medical schools; 1 nurse from the above 2 universities' schools of nursing; one delegate choen by the Speaker of the House; one senator chosen by the President of the Senate; one member from the general public with expertise in SCI; 2 members who either have a SCI or has an immediate family member with a SCI.

              All grants must be cure oriented or neuroprotective in nature. Currently we are funding 2 human trials. The first is at the U of MD Shock Trauma Hospital and is on sooner rather than later decompression in central cord syndrome. The second is at Hopkins hospital and provides for the aggressive management of blood pressure immediately following the SCI. The other two current grants are pre-clinical and to the Uniformed Services University on dealing with the glial scarring that occurs and channeling through it and Dr McDonald's FES and myelin regeneration in mice.

              Currently I'm chairing the Board. And even with a law in place stating what kind of research the board funds we still had 4 applications that did not come close to curing anything. We also hear how we will have to research pain because a cure will bring it on. Seems to me big pharma has a love affair with creating new pain meds so nope.

              Maryland also has a stem cell research board and embronics are legal here so some applications probably head there as they have $15 million this year alone.
              Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

              Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

              Comment


                #8
                thanks sue,

                any talk of u folks web casting

                also can your PI's colaberate with out of state groups
                http://justadollarplease.org/

                2010 SCINet Clinical Trial Support Squad Member

                "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

                .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

                Comment


                  #9
                  Originally posted by Leo
                  I would urge other frequent cure posters to watch this, cuz it gives great insight to many problems, percieved or true.

                  i love this webcast idea, maybe Maryland and the other big players will get online
                  I agree LEO. It was excellent insight into how the wheels turn and why it seems like they are turning so slowly to us. The webcast is a good idea for many reasons. It will help in keeping everyone honest.
                  Here's Hoping!

                  Comment


                    #10
                    I live in NY and never heard about any of this until now. Thanks for posting the link!

                    Comment


                      #11
                      Sue, Thanks for posting the information on Maryland! I'll be waiting for questions answered from Leo's post. I'd also like to see the meetings webcasted so we are better equipped to learn from the processes, but I do understand that it may not if they are not already mandated to do so. It would be great to see the processes during the awarding of this years 15 million.
                      http://spinalcordresearchandadvocacy.wordpress.com/

                      Comment


                        #12
                        I also live in upstate NY and haven't heard of any of this. What was the big secret? I supposed if they advertized they would have had to get a bigger room.

                        Comment


                          #13
                          Originally posted by wheelie-boy
                          I also live in upstate NY and haven't heard of any of this. What was the big secret? I supposed if they advertized they would have had to get a bigger room.

                          I also live in upstate New York, it must be a secret because I haven't heard a peep??
                          A good friend is someone who will come to bail you out of jail. A TRUE friend is the guy sitting next to you behind the same set of bars saying, "boy we sure f*cked up this time huh?"

                          Comment


                            #14
                            I feel I am always left out of the loop as well. Someone just happened to send me this in an e-mail attachment from a New York City group.
                            Get involved in politics as if your life depended on it, because it does. -- Justin Dart

                            I shall not tolerate ignorance or hate speech on this site.

                            Comment


                              #15
                              Originally posted by GRAMMY
                              I do not wish to run a monopoly on this thread...but I would like a response from Dr. Wise concerning a few issues that came up during the annual New York Spinal Cord Injury Research Board Annual Meeting.

                              1. 1,500 letters were sent out to possible sci participants through various doctors and medical centers with only a handful of responses concerning participation, research and clinical trials. Some of the board members got nervous when there was mention of a "registery" for imput from SCI folks. I gathered it was privacy related. In so many ways, it appears the board doesn't get any feedback from SCI folks. So the endless circle continues.
                              I wonder if the SCI community should be much more involved in contacting the board members that give grants in the first place rather than so much time being spent on chasing politicians and fighting for funding through the NIH? It appears there could be more pressure and communication coming from the SCI community directly to the very boards that hand out these huge grants within the various "state" budgets...is this correct? I just thought I was seeing lots of floundering for direction and various members wanting the funding to finally do some good. Should we have a group contacting these board members with feedback from the SCI community?
                              (Incidentally, only ONE sci person was there. Probably the number desiginated during the formation of the board).

                              2. With tons of money being awarded by these committees to various research groups and universities for more brick and mortar research on mice...why is there not a major push for all of the recipients to collaborate their findings and put the knowledge to bedside use? What group is ultimately responsible (if any) to actually do something with the results? It appears they could fund these 5 year mini basic science research projects worth millions from here to eternity but never put a cure together. I'm like Leo, I was frustrated just watching them trying to figure out what to do!!! I'm glad the webcast is now law for these meetings! I still can't quite believe what I saw! I'm glad this is on the web so others can see first hand!!! What was your take on this webcasted meeting?
                              Grammy,

                              The New York SCI Research Board has been very collaborative. Most of their money has been invested in collaborative research, using the latest tools of internet to allow and encourage input from the community. By the way, the Keck Center does a lot of work with and for the consortium that is testing new drugs for spinal cord injuryr search. I wish that you were at the meeting. There were a number of people in wheelchairs at the meeting. I was there, attending. I will try to get the details on on to participate in the monthly meetings of their consortium. They welcome community partcipation.

                              Wise.

                              Comment

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