Page 14 of 16 FirstFirst ... 45678910111213141516 LastLast
Results 131 to 140 of 153

Thread: It sure is frusterating with all the good things that seem to have been announced

  1. #131
    Curt,

    I don't think Suzy Harkema's results were hyped at all. What would they have to gain? If they over-exaggerated the results no one would believe them and donate in the future. I can tell you first hand how difficult it is to get clinical trials done. I thought our paper would be published by now and we would be starting trials in the U.S. It is taking forever, hopefully as we move forward things will happen much quicker.

  2. #132
    W2W symposium is just a few days away...

  3. #133
    Quote Originally Posted by Curt Leatherbee View Post
    I really don't see there has been any positive news for cure related SCI persons in quite sometime now. I was hopeful more would come out epidural stimulation but it moves at a snails crawl pace as with everything else. You sure would think this technology would be shared with more people affected with SCI if in fact it is so great. From everything I've seen, I think it was hyped a lot in a attempt to get people like me and their families to donate.
    Quote Originally Posted by Curt Leatherbee View Post
    I spoke with the CEO of the Reeve Foundation today and he seems like a really good guy, very knowlegable and gave me a lot of information. I think I was too hard on the Reeve foundation in this thread. I am sending them a donation too. He explained a interesting thing to me that when you donate direct to a School research dept like I did today that only a certain percentage of that goes directly to research as the school takes a certain amount, so in reality by donating to the Reeve foundation you may be getting more money directly to the cause than attempting to do a direct donation as I did today.

    We talked some about a guy named Henry Stifles, I did not realize it but his Dad started APA (American Paralysis Association) which later became the Chris and Dana Reeve Foundation. The man I spoke with today who is CEO there at CR foundation is named Peter Wilderotter I think I'll stay in touch with him, good person to know in the field of research, he invited me to stop by there when I'm in Jersey so I think soon I'll combine a trip to a Keck center open house, just 20 minutes away.
    Quote Originally Posted by Curt Leatherbee View Post
    In five years the Epidural Stimulation will be all set to go
    I thought you were excited about this "Big Idea" Reeve project with 36 people over the next 5 years enrolled in the Harkema studies. Did you not get selected after applying?

  4. #134
    Senior Member PC720's Avatar
    Join Date
    Mar 2013
    Location
    Memphis Tennessee
    Posts
    196
    Look at the bright side guys, at least you have scar tissue. I apparently don't even have that. No scar tissue no nothing. My neurologist has told me there is literally nothing in three sections of my spine. Even if they could do some kind of transplant there would be nothing for the cells to attach to, MS
    destroyed my spine. Three sections of hole. My CNS is disintegrating and there's nothing they can do about it.

  5. #135
    Senior Member
    Join Date
    Mar 2010
    Location
    Pennsylvania
    Posts
    4,993
    Blog Entries
    1
    Quote Originally Posted by PC720 View Post
    Look at the bright side guys, at least you have scar tissue. I apparently don't even have that. No scar tissue no nothing. My neurologist has told me there is literally nothing in three sections of my spine. Even if they could do some kind of transplant there would be nothing for the cells to attach to, MS
    destroyed my spine. Three sections of hole. My CNS is disintegrating and there's nothing they can do about it.
    Hopefully scaffold will help. A scar may be a wall that has to be gone around,over or through. Space may be easier. I wish you luck.

  6. #136
    Senior Member
    Join Date
    Mar 2010
    Location
    Pennsylvania
    Posts
    4,993
    Blog Entries
    1
    Quote Originally Posted by Curt Leatherbee View Post
    I really don't see there has been any positive news for cure related SCI persons in quite sometime now. I was hopeful more would come out epidural stimulation but it moves at a snails crawl pace as with everything else. You sure would think this technology would be shared with more people affected with SCI if in fact it is so great. From everything I've seen, I think it was hyped a lot in a attempt to get people like me and their families to donate.
    I don't think all the researchers from all the labs have periodical meetings where the main topic is "how can we get more money from Curt and his family". You have personally had high level conversations with the Reeve Foundation, do you think he took your call only for the chance of getting a donation? Did you actually think donating a little money would fast-track you into a Harkema trial?
    Last edited by nrf; 09-17-2015 at 09:07 PM.

  7. #137
    Quote Originally Posted by Jim View Post
    Curt,

    I don't think Suzy Harkema's results were hyped at all. What would they have to gain? If they over-exaggerated the results no one would believe them and donate in the future. I can tell you first hand how difficult it is to get clinical trials done. I thought our paper would be published by now and we would be starting trials in the U.S. It is taking forever, hopefully as we move forward things will happen much quicker.
    I think it's awfully early to expect Suzy to have another paper of published results ready to go. Her 5 year project just started and they are still recruiting patients.

  8. #138
    Quote Originally Posted by GRAMMY View Post
    I think it's awfully early to expect Suzy to have another paper of published results ready to go. Her 5 year project just started and they are still recruiting patients.
    I think Jim was referring to Dr. Wise's clinical trials and not Harkema. One thing I do know though is that at the pace of things any curative therapies are 200 to 300 years away. I was all for major protests in Washington DC instead of peaceful let us learn demonstrations. Until there is some kind of revolution nothing will change, we well remain seated in wheelchairs, patronized by the public and laughed at.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  9. #139
    Quote Originally Posted by Curt Leatherbee View Post
    I think Jim was referring to Dr. Wise's clinical trials and not Harkema. One thing I do know though is that at the pace of things any curative therapies are 200 to 300 years away. I was all for major protests in Washington DC instead of peaceful let us learn demonstrations. Until there is some kind of revolution nothing will change, we well remain seated in wheelchairs, patronized by the public and laughed at.

    That's what frustrates me the most - not how slow things are moving but how fast they could be going. I shouldn't be complaining because my input on funding/research is minimal but just knowing that everything could go much faster and we can be out of these chairs is so frustrating. Seems like a lot of pieces of the puzzle are there, it's just a matter of putting them together (I hope).

  10. #140
    Quote Originally Posted by Curt Leatherbee View Post
    I think Jim was referring to Dr. Wise's clinical trials and not Harkema. One thing I do know though is that at the pace of things any curative therapies are 200 to 300 years away. I was all for major protests in Washington DC instead of peaceful let us learn demonstrations. Until there is some kind of revolution nothing will change, we well remain seated in wheelchairs, patronized by the public and laughed at.
    I am not the kind of guy who likest protesting etc.. but you are 100% right in my opinion. If you look at history strong protests have been very effective to change things. Just look at the AIDS movment:

    http://hcmstrategists.com/wp-content...DSAdvocacy.pdf
    In God we trust; all others bring data. - Edwards Deming

Similar Threads

  1. Things are not looking good.........
    By bcsimpsons in forum Life
    Replies: 108
    Last Post: 06-02-2008, 10:01 AM
  2. just when i think things are good...
    By bjschild32 in forum Life
    Replies: 16
    Last Post: 06-15-2006, 10:14 AM
  3. Things are looking good....
    By JoshuaS in forum Care
    Replies: 1
    Last Post: 05-01-2003, 06:35 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •