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    #1

    Minnesota-help!!

    While discussing the upcoming trial that Dr. Young is proposing, Dr. Young felt that Minnesota could be a site for this trial. I asked him some questions on where to start and I got to thinking that I should also reach out to you. I am more than willing to start talking to people, etc. but I need your help. Is there anyone who might be interested in Minnesota? We have two very good clinical research facilities here. I will need some help to coordinate this effort. I need names and numbers now and I will get to work. Please let us not stop this momentumn. Together we can do this. Thank you.

    Kathy
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    #2
    I am bumping this thread. You do not have to be from Minnesota to help. I think that Mayo or the U of M would be great places to start but I do not have anyone I can contact. Are there any groups that I should go through first? Please help me get this rolling for all of us.

    Kathy

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      #3
      Kathy, I commend you on your enthusiasm to get this "party" started especially when we live in a state with medical faclities that are always on the cutting edge of research and tecnology.

      The Mayo and U of M along with the Sister Kenny (Abott Northwest Hospital) would be the top rated sites to push for trials and I would know a contact at Abott. Jim Hanson LICSW phone#612-863-5224. It would be a good starting point because of his contacts. He's been a social worker there for over 20 years and is a wheeler just like us.
      If I was meant to have wheels under my ass, what the hell are these legs for?
      http://www.facebook.com/profile.php?id=1455040496

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        #4
        Thank you so much. I will call him in the morning. Hopefully we can get this thing going. I will let you know how it went.

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          #5
          I am not sure how I may be of help to you but if you need someone in the background or beside you when time allows me to be there, I will do my best to be there for you momo and of course Wisey! As well as those that will benefit from this. I am up in the northern part of Mn. but now that spring is trying to arrive, I am willing to travel or assist through the computer, paperwork, calls, etc. I do not have connections I can think of right now that may be of help but then sometimes we end finding we know someone who knows someone, etc. PM with further thoughts. ~ T.

          Edit to say: This would be way cool! excited at the thought of...
          "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.

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            #6
            Thanks teesime. I will definitely get ahold of you. I also live in the northern part of MN. I too do not have any real connections but I am going to start with the phone number above.

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              #7
              i'd be very interested!
              May the fetus you save be gay

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                #8
                I failed to mention I'd like to help out in any way I can also. Give me a hollar and let me know.
                If I was meant to have wheels under my ass, what the hell are these legs for?
                http://www.facebook.com/profile.php?id=1455040496

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                  #9
                  when/where/time! ph.763.878.1350: Rusty+Julie

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                    #10
                    No time frame yet except I know that Dr. Young is sending groups of people for training this summer. I have contacted both Jim Hanson (Sister Kenney) and Peter Morton and am waiting for their calls back. Susan M. is checking some things out. Right now I think the biggest help would to be to see if there is any interested parties here in MN and let them know we want them to do this. Is there any bills currently at the MN congress for funding for clinical trials? Is there anyone that has any contacts at Mayo? Thank you all for your help. I will keep you updated on what is happening. If you think that something else needs to be done, etc. please feel free to let me know and go with it. I am very open to other peoples thoughts and ideas.
                    Last edited by momo3; 24 Mar 2009, 1:43 PM. Reason: thiinking out loud

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                      #11
                      I think anyone on here that lives in Minnesota is very interested in this - how could they not be. This just gave me a whole new outlook. Maybe because my husband's injury is so new alot of this still didn't seem real to me but now it does. I was losing hope for Stem Cells. I still write to news stations and all but this just renewed my hope that this could become a reality. Dr Young needs to know that if he needs help from this end - we are here to do what we can.
                      Cathi - Wife of Edward (C6-7 complete) as of Sept. 2,2007

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                        #12
                        I am in contact with Dr. Young and have just started putting out "feelers" to see if we can contact the powers to be at the U or Mayo. I will keep everyone updated on my end and will be hopefully calling in the troops when it comes to raising funds, etc. Thanks again everyone!

                        Kathy

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                          #13
                          I have talked to the medical director at Sister Kenney-Dr. Sandin. He sounded interested and wanted more information. It is a long process he said because this will have to go through the hospital review board, etc. The possible cost of the trial for 20 participants in $2 million. I know that is a lot but if money is the only issue preventing trials in Minnesota/Minneapolis, then I think that with all of your help, that amount is doable. Maybe a couple words of encouragement from others might help push the process. I don't mind the coordination and calling but I don't want them to get "bored" of me.

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                            #14
                            Originally posted by momo3 View Post
                            I have talked to the medical director at Sister Kenney-Dr. Sandin. He sounded interested and wanted more information. It is a long process he said because this will have to go through the hospital review board, etc. The possible cost of the trial for 20 participants in $2 million. I know that is a lot but if money is the only issue preventing trials in Minnesota/Minneapolis, then I think that with all of your help, that amount is doable. Maybe a couple words of encouragement from others might help push the process. I don't mind the coordination and calling but I don't want them to get "bored" of me.
                            Great job Kathy,

                            I went through St. Mary's in Rochester, I would think they'd jump on this. Do we have someone living in Rochester, I would love to go back and visit...dam long drive.

                            I know Sue has been there.

                            With CDRPA passed and the NASCINET and a helpful N.I.H this would be the right time for them to act. imo

                            Kathy the trick is to wear them down..ok lets do it and get this lady off our back.

                            did he say 2 million for 20 participants
                            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."

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                              #15
                              I haven't received anyone's name or number at Mayo in Rochester. Do you have someone I can call? Sue is working on a different angle. I agree that someone here in MN would/should jump at the chance. The $2 million is just an early estimate. I was told $100,000 per participant. If I am quoting this number wrong, please correct me. When I tried to email some more info. today, it didn't go through. I will be contacting Sister Kenney again on Monday. Nothing ever gets done Friday afternoon. Any and all are welcome to call Sister Kenney, Abbot Northwestern, the U of M and Mayo to ask about hosting a trial. I won't mind the help.

                              Kathy

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