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Thread: Highlights and (My Reasons for) Hope from 2006

  1. #81
    Banned adi chicago's Avatar
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    to be an sci is not easy and funny .ab people do not know to much about our torture.
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  2. #82
    If any moderator tells you they think they know who is closest to the cure, they are only giving you an opinion. Moderators don't know more than anybody else about when the cure will arrive, unfortunately.

    Spidergirl's SAG analogy has some validity. The scientists can't do basic research without money. Investors rarely invest in basic research though; they want more advanced, proven science to throw their money at. They want to be closer to the payoff.

    Usually the government funds basic research into illnesses. Sometimes philanthropists do too I think.

  3. #83
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by betheny
    If any moderator tells you they think they know who is closest to the cure, they are only giving you an opinion. Moderators don't know more than anybody else about when the cure will arrive, unfortunately.

    Spidergirl's SAG analogy has some validity. The scientists can't do basic research without money. Investors rarely invest in basic research though; they want more advanced, proven science to throw their money at. They want to be closer to the payoff.

    Usually the government funds basic research into illnesses. Sometimes philanthropists do too I think.
    Again,

    this is why I ask for proof that chronic rodents are walking. I think this is enough proof for some pudding. Than let us take this and show it too the world. I know that scientists need money for basic research and unfortunately that's not gonna happen without 2 things. A. the scientist has to have some very good proof that he/she has something substantial enough for funding from a private sector and without credentials or some history, fame, recognition , etc. this will be very hard. This is also sad for the scientists because the scientists needs to be in a lab not out there asking for money. But if they want that glory and they are sure- they will do what it takes. The other is B. US! us as a community have to go and fight our government for money for better quality of life and/or cure. It is not our jobs to go and ask private sectors for money for scientists, it doesn't work like that. But it is our jobs to try to push our injury at the forefront. ( especially because its such a small community and we don't have nearly as many voices ) , however we could help with A. and let the scientists do their jobs if we have PROOF. Enuff said.

  4. #84
    Quote Originally Posted by Susan Fajt
    In anycase, there is an enourmous amount of studies going on in the SCI world, therefore it is difficult to determine which one is *the best*, this is why i have asked for brilliant minds to chime and unite for the better good of us all. My plan is to take this information and present it to people such as Oprah, Larry King, others that can help us. I felt by having a *really* updated list of rats/cats/primates or whatever that has been cured after substaining a SCI the world at large would have to question why we are left to suffer when *lots* of SCI's would prefer to undergo promising expermintal procedures,
    Susan, this is meant to be constructive, not mean.

    With that out of the way...

    Without having a working knowledge of the research you are presenting, a list will do you no good. I "suggested" a "list"' of things to say when you went up for the Brownback hearing, but you didn't feel like mentioning them because you didn't understand them. You then let Brownback "correct" your prepared testimony. He added "adult stem cells" all over the place and you read it as if nothing was wrong. I still have my initial suggestions and the pre-Brownback copy of your prepared testimony if you'd like me to post them.

    Essentially, unless you're willing to learn the science, having you as a spokesman is dangerous for us.

    No malice is intended.

    Spider, newbie's not who you think. You might want to apologize.
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

  5. #85

    Lightbulb

    Steven,

    This is meant to be constuctive too...

    Perhaps it would be good for you to fight your way into the Senate and ask for funding or what have you... I am very proud of what i have done and for you to see me as dangerous is bizarre and a little bit funny. I must also correct you as Brownback *never* touched my testimony and it was an excellent speach btw.. I also remember what you said to me in DC in front of many people, it was down right cruel and sick!!! So, i will end knowing i have done my best, nobody is prepared to juggle so many things that entails this injury. We need to stay focused on the present/future not the past Steven, c'mon... I have seen your character first hand and i am sad to say that you are the one that is dangerous as words filled with such vulgar hatred are not what is going to keep *unity* at play.. This is very important, and i also would like to echoe spiders thoughts when telling of Keirstead showing others that a cure is possible in rats, now what are we waiting for? Our actions speak volumes....
    It is important to gather all of the rats/cats/primates that have recovered from a chronic SCI and use these facts to help each other outta this mess.. I am simply asking for us to work together and who knows where it will take us if we can be constructive in our hearts and souls and move with passion into the hearts of others that will help us to get whatever is needed done and then who knows? I have at least 10 videos of rats having made a full recovery, and will continue to work on this endeavor.. thanks for the ones who are pre-pared to help, it just might free us! We will never know until we try..
    Godspeed for a cure!
    Godspeed~
    Susan
    www.sciwalker.com

  6. #86

    Believe And Go For It!

    Dear Spidergirl, Susan Fajt and CareCure Members,

    Although I do not suffer from SCI, I am nevertheless paralyzed from head to toe as a result of the fatal progressive neurodegenerative desease, Amyotrophic Lateral Sclerosis also known by its acronym, ALS, or by its perhaps most well-known name, Lou Gehrig's Disease. I was diagnosed in 2003, in a wheelchair 2004 and had a tracheostomy January 2006. I'd be dead from respiratory failure but for the vent. Indeed, an unfortunate fact is that a majority of People with ALS (PALS) decide to forego artificial respiration and die within 2 to 5 years of diagnosis. There is no drug or therapy for ALS

    There are so many parallels regarding SCI and ALS and like all of you I am searching for information and answers. In my quest, a few years ago, I came across Dr. Huang and his OEG therapy and how he was treating SCI and ALS patients in China and how he studied under Dr. Wise Young. I also discovered this wonderful, vibrant and informative forum. I ended up travelling to NJ to meet Dr. Young during one of his open houses. We hugged and talked extensively about politics, his approach, his research and his endeavors, as well as Dr. Huang. Dr. Young was very candid and I decided not to go to China.

    Anyways, I became an activist and advocate for ALS research, and despite my current condition, remain as "vocal" and "active" as ever. Much of my approach I borrowed from Dr. Young's playbook, who borrowed from the AIDS activist handbook. As we all know, our hope for treatments and a cure goes hand in hand with research and clinical trials and that is all about funding. But I have also learned that another major impediment is the lack of incentives for researchers to collaborate and share information. Worst yet is the lack of communication and collaboration within an academic setting. University researchers are operating isolated within individual "silos". I know that Harvard, Columbia and Johns Hopkins Universities have been addressing this issue by implementing new policies, commitees, boards, etc. I am sure that Dr. Young is dealing with this at Rutgers.

    What I want to say is that I view all of you as Brothers and Sisters in Arms fighting an uphill battle because of our small numbers. Yet everyone is doing their part, whether that be writting letters or raising awareness or raising funds. The truth is that no one knows what they are capable of accomplishing in terms of impacting or inspiring or influencing others or those around them unless they act on there thoughts, visions, wishes or dreams. To Spidergirl, Susan Fajt and others, I say believe and go for it, whatever "it" is or may be.

    We have seen what celebreties such as the late Christopher Reeves and Michael J. Fox have been able to do. But here are 2 individuals, Stephen Heywood and Jenifer Estess whose seperate visions inspired two organizations http://www.als.net/ and http://www.projectals.org/ that have profoundly impacted the way ALS research is conducted. Unfortunately, like Christopher Reeves, they both had their lives cut short. But please visit those sites and research these individuals and see how ordinary people effected serious change.

    Finally, I want to say thank-you to all of you who are fighting the good and courageous fight. I strongly believe that a cure in SCI or ALS will positively impact the other especially in the regeneration of neurons.

    I would also like to share with you a short piece I authored titled "Choosing To Live With ALS". A few years ago The Angel Fund, an ALS fundraising group located here in Massachusetts, asked me to write something for a book they finally published called "If They Could Only Hear Me". It's a collection of personal stories about ALS and the families that have been affected by it.

    It is clear that science is bearing down on SCI and ALS and that a viable therapy or cure is no longer a question of if but when.

    I wish everyone involved,

    Peace, Love and Energy,

    George Kostas Mazareas


    Choosing To Live With ALS

    The last few years of my life have been filled with many of the beautiful things fairy tales are made of: regaining vision in my eye after being blind for 25 years; marrying the woman I love in a fairy tale wedding that took place in Greece; building and moving into our dream house; and, the most beautiful of all, witnessing the birth of our baby girl, Eleni, whose healthy presence on earth defied all odds. Now, looking back, I thankfully savored every moment. The irony being that during those happiest of times, I was oblivious to the fact that ALS was quietly eating away at my body.

    Suffering with ALS during the prime of my life is certainly not where I want to be. Nevertheless, like so many others, that is exactly where I am. To say I have been dealt a bad hand or thrown a curve ball is to ignore the cruel reality of ALS. It would be more accurate to the say I have been thrown or dealt a death blow. Statistics don’t lie. Even though there is much that is not known about ALS, the mortality rate and prognosis are well documented.

    The day I learned my diagnosis might be ALS I left the doctor's office only to sit in my car and cry for what seemed like hours. It would be the first of many overwhelmingly sad moments. A few weeks later, after many more tests, I was to finally receive a definitive diagnosis. My wife, Cynthia, and I pulled into the parking garage next to my doctor’s office. Even though there was an outside chance that I might not have ALS, in my gut I knew the score. I sat frozen in the passenger’s seat, paralyzed by fear, shaking my head and crying uncontrollably. Cynthia held me, telling me everything would be all right.

    As my doctor broke the news my wife began weeping. Strangely enough, during this ugly moment of truth, I was overcome with a surreal calm and sense of clarity. I had at a very early age decided to live my life by focusing on the positive things this world had to offer and not be weighed down by the negative elements. As a matter of fact, I have always been accused of wearing “rose colored glasses”, especially when I refused to remain upset over any situation. Now, here I was, my life was about to undergo unimaginable changes. Reaching out, I took my wife's hand and held it tight.

    During my life I experienced many defining moments, but none like that day. On that day I refused to die with ALS. I instead decided to live with ALS. One could say that I have no choice in the matter and they would be partly right.

    There is no cure for ALS, not even a viable therapy. Nevertheless, everyone has a choice and I chose to live with a purpose and a goal; to do anything and everything humanly possible to raise awareness, support research and find a cure.

    From generation to generation there is an undeniable cycle of life that goes from the cradle to the grave. With each cycle passes yet another generation and with each generation comes yet a better opportunity to find a cure. Whenever I look into my beautiful daughter's eyes I am reminded of that defining moment when I chose to live with ALS so that she nor any other child would ever have to.
    Last edited by Agios; 01-26-2007 at 03:06 AM.

  7. #87
    Quote Originally Posted by Agios
    Dear Spidergirl, Susan Fajt and CareCure Members,

    Although I do not suffer from SCI, I am nevertheless paralyzed from head to toe as a result of the fatal progressive neurodegenerative desease, Amyotrophic Lateral Sclerosis also known by its acronym, ALS, or by its perhaps most well-known name, Lou Gehrig's Disease. I was diagnosed in 2003, in a wheelchair 2004 and had a tracheostomy January 2006. I'd be dead from respiratory failure but for the vent. Indeed, an unfortunate fact is that a majority of People with ALS (PALS) decide to forego artificial respiration and die within 2 to 5 years of diagnosis. There is no drug or therapy for ALS

    There are so many parallels regarding SCI and ALS and like all of you I am searching for information and answers. In my quest, a few years ago, I came across Dr. Huang and his OEG therapy and how he was treating SCI and ALS patients in China and how he studied under Dr. Wise Young. I also discovered this wonderful, vibrant and informative forum. I ended up travelling to NJ to meet Dr. Young during one of his open houses. We hugged and talked extensively about politics, his approach, his research and his endeavors, as well as Dr. Huang. Dr. Young was very candid and I decided not to go to China.

    Anyways, I became an activist and advocate for ALS research, and despite my current condition, remain as "vocal" and "active" as ever. Much of my approach I borrowed from Dr. Young's playbook, who borrowed from the AIDS activist handbook. As we all know, our hope for treatments and a cure goes hand in hand with research and clinical trials and that is all about funding. But I have also learned that another major impediment is the lack of incentives for researchers to collaborate and share information. Worst yet is the lack of communication and collaboration within an academic setting. University researchers are operating isolated within individual "silos". I know that Harvard, Columbia and Johns Hopkins Universities have been addressing this issue by implementing new policies, commitees, boards, etc. I am sure that Dr. Young is dealing with this at Rutgers.

    What I want to say is that I view all of you as Brothers and Sisters in Arms fighting an uphill battle because of our small numbers. Yet everyone is doing their part, whether that be writting letters or raising awareness or raising funds. The truth is that no one knows what they are capable of accomplishing in terms of impacting or inspiring or influencing others or those around them unless they act on there thoughts, visions, wishes or dreams. To Spidergirl, Susan Fajt and others, I say believe and go for it, whatever "it" is or may be.

    We have seen what celebreties such as the late Christopher Reeves and Michael J. Fox have been able to do. But here are 2 individuals, Stephen Heywood and Jenifer Estess whose seperate visions inspired two organizations http://www.als.net/ and http://www.projectals.org/ that have profoundly impacted the way ALS research is conducted. Unfortunately, like Christopher Reeves, they both had their lives cut short. But please visit those sites and research these individuals and see how ordinary people effected serious change.

    Finally, I want to say thank-you to all of you who are fighting the good and courageous fight. I strongly believe that a cure in SCI or ALS will positively impact the other especially in the regeneration of neurons.

    I would also like to share with you a short piece I authored titled "Choosing To Live With ALS". A few years ago The Angel Fund, an ALS fundraising group located here in Massachusetts, asked me to write something for a book they finally published called "If They Could Only Hear Me". It's a collection of personal stories about ALS and the families that have been affected by it.

    It is clear that science is bearing down on SCI and ALS and that a viable therapy or cure is no longer a question of if but when.

    I wish everyone involved,

    Peace, Love and Energy,

    George Kostas Mazareas


    Choosing To Live With ALS

    The last few years of my life have been filled with many of the beautiful things fairy tales are made of: regaining vision in my eye after being blind for 25 years; marrying the woman I love in a fairy tale wedding that took place in Greece; building and moving into our dream house; and, the most beautiful of all, witnessing the birth of our baby girl, Eleni, whose healthy presence on earth defied all odds. Now, looking back, I thankfully savored every moment. The irony being that during those happiest of times, I was oblivious to the fact that ALS was quietly eating away at my body.

    Suffering with ALS during the prime of my life is certainly not where I want to be. Nevertheless, like so many others, that is exactly where I am. To say I have been dealt a bad hand or thrown a curve ball is to ignore the cruel reality of ALS. It would be more accurate to the say I have been thrown or dealt a death blow. Statistics don’t lie. Even though there is much that is not known about ALS, the mortality rate and prognosis are well documented.

    The day I learned my diagnosis might be ALS I left the doctor's office only to sit in my car and cry for what seemed like hours. It would be the first of many overwhelmingly sad moments. A few weeks later, after many more tests, I was to finally receive a definitive diagnosis. My wife, Cynthia, and I pulled into the parking garage next to my doctor’s office. Even though there was an outside chance that I might not have ALS, in my gut I knew the score. I sat frozen in the passenger’s seat, paralyzed by fear, shaking my head and crying uncontrollably. Cynthia held me, telling me everything would be all right.

    As my doctor broke the news my wife began weeping. Strangely enough, during this ugly moment of truth, I was overcome with a surreal calm and sense of clarity. I had at a very early age decided to live my life by focusing on the positive things this world had to offer and not be weighed down by the negative elements. As a matter of fact, I have always been accused of wearing “rose colored glasses”, especially when I refused to remain upset over any situation. Now, here I was, my life was about to undergo unimaginable changes. Reaching out, I took my wife's hand and held it tight.

    During my life I experienced many defining moments, but none like that day. On that day I refused to die with ALS. I instead decided to live with ALS. One could say that I have no choice in the matter and they would be partly right.

    There is no cure for ALS, not even a viable therapy. Nevertheless, everyone has a choice and I chose to live with a purpose and a goal; to do anything and everything humanly possible to raise awareness, support research and find a cure.

    From generation to generation there is an undeniable cycle of life that goes from the cradle to the grave. With each cycle passes yet another generation and with each generation comes yet a better opportunity to find a cure. Whenever I look into my beautiful daughter's eyes I am reminded of that defining moment when I chose to live with ALS so that she nor any other child would ever have to.
    efkaristo, para poli. a po tho, sto ourano.

  8. #88
    Quote Originally Posted by Susan Fajt
    Perhaps it would be good for you to fight your way into the Senate and ask for funding or what have you...
    The US Constitution forbids me from entering the Senate until I am 30, so I cannot do that. I believe that's the vulgar and cruel thing I said to you during dinner -- "How old are you? You're too young to be a Senator."

    Which videos do you have of rats that have made full recoveries? Which researchers did the work? Share with us, so we can help.

    Re: Brownback, this is the wrong thread, so I'll leave it at that.
    ...it's worse than we thought. it turns out the people at the white house are not secret muslims, they're nerds.

  9. #89

    Thumbs up

    Quote Originally Posted by Agios
    Dear Spidergirl, Susan Fajt and CareCure Members,

    Although I do not suffer from SCI, I am nevertheless paralyzed from head to toe as a result of the fatal progressive neurodegenerative desease, Amyotrophic Lateral Sclerosis also known by its acronym, ALS, or by its perhaps most well-known name, Lou Gehrig's Disease. I was diagnosed in 2003, in a wheelchair 2004 and had a tracheostomy January 2006. I'd be dead from respiratory failure but for the vent. Indeed, an unfortunate fact is that a majority of People with ALS (PALS) decide to forego artificial respiration and die within 2 to 5 years of diagnosis. There is no drug or therapy for ALS

    There are so many parallels regarding SCI and ALS and like all of you I am searching for information and answers. In my quest, a few years ago, I came across Dr. Huang and his OEG therapy and how he was treating SCI and ALS patients in China and how he studied under Dr. Wise Young. I also discovered this wonderful, vibrant and informative forum. I ended up travelling to NJ to meet Dr. Young during one of his open houses. We hugged and talked extensively about politics, his approach, his research and his endeavors, as well as Dr. Huang. Dr. Young was very candid and I decided not to go to China.

    Anyways, I became an activist and advocate for ALS research, and despite my current condition, remain as "vocal" and "active" as ever. Much of my approach I borrowed from Dr. Young's playbook, who borrowed from the AIDS activist handbook. As we all know, our hope for treatments and a cure goes hand in hand with research and clinical trials and that is all about funding. But I have also learned that another major impediment is the lack of incentives for researchers to collaborate and share information. Worst yet is the lack of communication and collaboration within an academic setting. University researchers are operating isolated within individual "silos". I know that Harvard, Columbia and Johns Hopkins Universities have been addressing this issue by implementing new policies, commitees, boards, etc. I am sure that Dr. Young is dealing with this at Rutgers.

    What I want to say is that I view all of you as Brothers and Sisters in Arms fighting an uphill battle because of our small numbers. Yet everyone is doing their part, whether that be writting letters or raising awareness or raising funds. The truth is that no one knows what they are capable of accomplishing in terms of impacting or inspiring or influencing others or those around them unless they act on there thoughts, visions, wishes or dreams. To Spidergirl, Susan Fajt and others, I say believe and go for it, whatever "it" is or may be.

    We have seen what celebreties such as the late Christopher Reeves and Michael J. Fox have been able to do. But here are 2 individuals, Stephen Heywood and Jenifer Estess whose seperate visions inspired two organizations http://www.als.net/ and http://www.projectals.org/ that have profoundly impacted the way ALS research is conducted. Unfortunately, like Christopher Reeves, they both had their lives cut short. But please visit those sites and research these individuals and see how ordinary people effected serious change.

    Finally, I want to say thank-you to all of you who are fighting the good and courageous fight. I strongly believe that a cure in SCI or ALS will positively impact the other especially in the regeneration of neurons.

    I would also like to share with you a short piece I authored titled "Choosing To Live With ALS". A few years ago The Angel Fund, an ALS fundraising group located here in Massachusetts, asked me to write something for a book they finally published called "If They Could Only Hear Me". It's a collection of personal stories about ALS and the families that have been affected by it.

    It is clear that science is bearing down on SCI and ALS and that a viable therapy or cure is no longer a question of if but when.

    I wish everyone involved,

    Peace, Love and Energy,

    George Kostas Mazareas


    Choosing To Live With ALS

    The last few years of my life have been filled with many of the beautiful things fairy tales are made of: regaining vision in my eye after being blind for 25 years; marrying the woman I love in a fairy tale wedding that took place in Greece; building and moving into our dream house; and, the most beautiful of all, witnessing the birth of our baby girl, Eleni, whose healthy presence on earth defied all odds. Now, looking back, I thankfully savored every moment. The irony being that during those happiest of times, I was oblivious to the fact that ALS was quietly eating away at my body.

    Suffering with ALS during the prime of my life is certainly not where I want to be. Nevertheless, like so many others, that is exactly where I am. To say I have been dealt a bad hand or thrown a curve ball is to ignore the cruel reality of ALS. It would be more accurate to the say I have been thrown or dealt a death blow. Statistics don’t lie. Even though there is much that is not known about ALS, the mortality rate and prognosis are well documented.

    The day I learned my diagnosis might be ALS I left the doctor's office only to sit in my car and cry for what seemed like hours. It would be the first of many overwhelmingly sad moments. A few weeks later, after many more tests, I was to finally receive a definitive diagnosis. My wife, Cynthia, and I pulled into the parking garage next to my doctor’s office. Even though there was an outside chance that I might not have ALS, in my gut I knew the score. I sat frozen in the passenger’s seat, paralyzed by fear, shaking my head and crying uncontrollably. Cynthia held me, telling me everything would be all right.

    As my doctor broke the news my wife began weeping. Strangely enough, during this ugly moment of truth, I was overcome with a surreal calm and sense of clarity. I had at a very early age decided to live my life by focusing on the positive things this world had to offer and not be weighed down by the negative elements. As a matter of fact, I have always been accused of wearing “rose colored glasses”, especially when I refused to remain upset over any situation. Now, here I was, my life was about to undergo unimaginable changes. Reaching out, I took my wife's hand and held it tight.

    During my life I experienced many defining moments, but none like that day. On that day I refused to die with ALS. I instead decided to live with ALS. One could say that I have no choice in the matter and they would be partly right.

    There is no cure for ALS, not even a viable therapy. Nevertheless, everyone has a choice and I chose to live with a purpose and a goal; to do anything and everything humanly possible to raise awareness, support research and find a cure.

    From generation to generation there is an undeniable cycle of life that goes from the cradle to the grave. With each cycle passes yet another generation and with each generation comes yet a better opportunity to find a cure. Whenever I look into my beautiful daughter's eyes I am reminded of that defining moment when I chose to live with ALS so that she nor any other child would ever have to.
    Yeiasou yiorgo! Se agapo para poli! Eisai katapliktikos! I am hopefull very hopefull for you for all of us. Things are moving quickly lately, and nobody can stop progress. Ill write again to senators, every little thing helps
    even though we are not famous, they have to listen to us so they can speed the stem cells therapy which it will help a lot. filakia stin elenitsa sas.
    manouli.

  10. #90
    Agios,
    Your writing is exquisite.
    Thank you for sharing with us.
    I hope your post becomes a community sticky.
    Life isn't about getting thru the storm but learning to dance in the rain.

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