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Thread: Send a question to the new CEO of Rick Hansen Foundation

  1. #91
    Senior Member lynnifer's Avatar
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    A few years back I was involved with a clinical trial out of the University of Western Ontario for electrical stimulation and its effect on healing pressure sores.

    Those funds from that study came from the Ontario Neurotrauma Foundation.

    http://www.onf.org/index_sci.html

    In fact, Dr Pamela Houghton is featured in their annual report. That is who I saw.
    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

  2. #92
    Quote Originally Posted by Patrick Madsen View Post
    Without Rick, and those before him; your accessibility that you take for granted and the many jobs that are now accessible to us were non-existent. Not sure how accessible Italy is now, but 20 years ago, it was non-existent. That came about by people showing the gov't it was in their best interest to change. They sure didn't do it because it was the right thing to do, that's for sure.

    Show me where Rick has said he didn't care about cure. Perhaps he expounds Care because that is something that can be done now and make an enormous difference for people with SCI's lives. Once you get a Nation interested, they will take the next step and see that cure is invauable for the Nations interest. China and India are prime examples of this.

    He didn't go around the world in honor of a cure. He went around the world in honor of Terry Fox! We all recognized how important it was to persuade small communities to Nations that with minor changes, major advances can be made for its citizens. As talk of possible sci regeneration came about, it was added to the agenda. It took time to convince the money lenders and researchers themselves that it was a worthwhile cause.

    Obviously, the Foundations are not answering your questions to your satisfaction. Do what Rick, Marc Buoconti(sp) Mike Utley, Chris Reeve and others did; they didn't get satisfaction with answers they were getting from the powers that be, so they created their own foundations with little or no idea of how to do it nor money to fund it. Rick was just a young, very poor man, with little more than a BA in Physical Education. If he can do it, you can also. Take your dream of what a foundation should be doing and do it; you can do it. You have a purpose in mind and a goal you want to reach. Go for it. It all starts with that first step, the rest will follow. Perhaps start by convincing Italy that it is in their best interest to fund research. The worst thing they will do is make money from the thousands flocking there if they come up with a solution.

    It's been a good thread, but it's just rehashing over and over. We get the idea that cure is your prime goal. We, from the older generation made the world more accessible and inclusive for you younger generation to take it to the next step. You can do it, time for complaining is over, fix it.

    God Bless and may you accomplish everything you dream happening.
    Patrick,

    I believe I understand your answer.

    First let me say that in 1985 when Rich started his "rolling" I was in my first year of high school.
    From my high school building to the bus station I use to go to get the bus home I had to cross the little city, about 20 mins walk.
    In 1985 the city was a mess because of construction works to make the city w/c friendly. I still remember that very well because I often had to run around the construction works not to miss the bus.
    So if now I have a decent accessibility in my city it is not thanks to Rick.

    Then as I am sure you know "the original dream" was a "cure". Such a great dream was admirable in 1985, in my opinion. Shouldn't we all dream even bigger today?

    The difference beteween today and 1985 is that in 1985 there was almost no orgs about SCI cure and care.
    Today we have many well known SCI orgs (which are in control of communication, sports etc. around SCI) that have a conservative attitude. I and many others have tried to do several things about a cure but we have found the opposition of existing SCI orgs.
    That is an obstacle that Rick didn't have. It's a big obstacle believe me"

    And once again I really believe Rick is a good guy. I just wish he would be willing to listen to some criticism that can give him the oportunity to do even better things for people with SCI.
    Life is an endless learning process in my opinion, so there is always something to learn as there is always a better way to do things.

    Please contact me via PM, if you are not afraid of me -LOL- to see if we can move forward.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

  3. #93
    Quote Originally Posted by canuck View Post
    http://www.rickhanseninstitute.org/i...t2011_web1.pdf

    http://icord.org/research/research-studies/

    http://www.rickhanseninstitute.org/i...ls_31mar11.pdf

    I"m really confused how can I as a person with only a high school education can I make the leap that work to make sci's progressively less disabling which they have become is a way towards working towards the cure? Sure it's not the pull the rabbit out of the hat instant soloution but it is progress. People that would have ended up in chairs 15-20-25 years ago are walking out of the hospital now. In my mind the new treatment modalities are restorative therapies.
    There are much better therapies waiting to get to a clinical stage so I am sorry but I can't be happy with what is given today to people with SCI.
    In God we trust; all others bring data. - Edwards Deming

  4. #94
    Quote Originally Posted by canuck View Post
    http://www.rickhanseninstitute.org/i...t2011_web1.pdf

    http://icord.org/research/research-studies/

    http://www.rickhanseninstitute.org/i...ls_31mar11.pdf

    I"m really confused how can I as a person with only a high school education can I make the leap that work to make sci's progressively less disabling which they have become is a way towards working towards the cure? Sure it's not the pull the rabbit out of the hat instant soloution but it is progress. People that would have ended up in chairs 15-20-25 years ago are walking out of the hospital now. In my mind the new treatment modalities are restorative therapies.
    It's the top two reports that you pointed out that is what made me start to think about money they're spending on regeneration.
    Please don't misunderstand my point and the point behind the emails. I don't believe that RHF hasn't done any good work, but I want to know about their spending on regeneration of the central nervous system.
    If they don't spend very much on this, I'm not happy, but they need to be clear. Let people know how the money is split up so they can decide about donations or try to influence the spending.
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

  5. #95
    Pao, Believe me, I am not afraid of you. And please don't tell me what his original dream was because I was less than 6 feet away from him when he made the decision to roll around the world. We were all in mourning for Terry, drinking a few Canadian Blue, when Tim Frick and Rick came up with the idea of going around the world. At first we spoke about just finishing the run from where Terry had to finally admit that he had to go in for tests due to his chest hurting. It turned out to be cancer again. Then the talk got to be about hell, why not go around the world, and it blossomed from there. Stan Stronge and Marshall Smith helped get the organization details in order and introduce those with money connections to the idea as Rick trained, did marathons, the first disabled race in the a/b Olympics and finish school. It was not about cure, that came about as a handle when the organizing committee came about to help with the details of the run. It was always about accessibility, inclusion, keeping a Positive Mental Attitude and physical fitness. Cure was barley mentioned because even the few researchers who were interested in its possibilites had no idea of where to start or if it was even feasible. It was unheard of really, the science was just not there yet. I think Cure came into the picture because of Terrys' dedication for a cure for Cancer.

    I have concerns that you are not going to get too far with any foundation because of your continual posturing and challenging others with the bombardment that we are afraid of you or you are the only one with the knowledge to get others to do what you think their goals should be. If I were a board of directors for any foundation and you came up to me with your attitude, I would dismiss you as one who is not able to make things happen due to your narrow mindedness and confortational attitude. The only way any person, foundation or country is going to change is if it's in their best interest. They want to know the benefits of the effort not because of confortation.

    I'm not challenging you in the least. I do resent that you have the audacity to tell anyone with history, and there are many of us here, what went on before you were even in highschool. I don't speak for Rick and will not put him or anyone down because their efforts differ in the way I would prefer to have them done. One thing all the organizers of any foundation have in common, in my opinion, is they saw a need and rather than complain and grouse about how bad it is, they chose to make a difference. Rather than build a wall with a confortational attitude they decided to change the path around the wall.

    I thought I was fairly clear stating that we older generation helped make the path clear enough for you younger gerneration to take the next step. Berating others and telling us what we think or how things happened is not taking the next step. I have no qaulms taking any organization to task about their written goals and agendas. If you do take them on, it would be prudent to have concrete evidence rather than off the wall remarks and confortational innuendoes. The response is more apt to be returned when they know you are educated and up to speed on the subject with facts.

    I think I've said more than I intended tell anyone. What went on with Terry, Rick and the others who were there is still very fresh and personal. Terry and Rick were not heros or someone to put on pedestals to me; they were comrades and brothers in sport.

    I'm not afraid of you in anyway Pao; I'm sorry if you feel that I am. Trustfully, I am there for support and encouraging you or anyone to go for it and make it happen in a positive way.

    As always, God Bless and may your dreams come to fruitation. I'm done with commenting to this thread.
    Last edited by Patrick Madsen; 08-06-2011 at 01:28 AM.

  6. #96
    Sorry posted twice

  7. #97
    From my experience with big foundations and SCI orgs, and looking some of their actual roadmaps and funding projects, the narrow minded actitude is installed very deep in their core. They are not transparent and continue to act and think like we were in the 80s. Instead to listen voices that claim for a change in the way they are working, they act like old man telling children what is the good path even when they are the only ones thinking that way.
    More open minded SCI orgs would lead us one step closer to real reparative treaments, but maybe thereĀ“s no interests in such thing.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

  8. #98
    Ok, Rick Hansen was never about cure - let's forget his organizations from a cure perspective - cynically one might think the word cure was used to dupe cure minded people into contributing

  9. #99
    Senior Member lynnifer's Avatar
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    Patrick is right that Rick started his trek around the world for Terry ... as it went it became more about accessibility and inclusion.

    I'm not sure what year 'cure' popped into the verbiage but it used to be 50% cure research, 50% quality of life.

    I'd love for them to fund a cure but there is nothing to fund i.e. no cure.
    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

  10. #100
    so can we now retire this thread to the forum to bitch and complain?

    http://sci.rutgers.edu/forum/showthread.php?t=80733

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