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

  1. #91
    Senior Member spidergirl's Avatar
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    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.
    Agios,

    I am so sorry. I hope through all our efforts we can end this needless suffering. My warmest wishes too you and your family.

  2. #92
    Seriously, I am curious to know what you are doing to move a cure along. Secret contacts and secret schemes don't mean ^%$. Do you actively participate in research studies? Do you actively work with your legislators to influence their opinion and their vote? Do you actively raise funds to support research or policital advocacy? How are you actively working to educate the public and the people who make these decisions? I don't think that anyone who doesn't do at least some of these things can bitch.

    So, I'll ask again. What are you going to do TODAY, this week, next month, this YEAR to promote the work toward a cure.

    Dr. Wise started this thread with such a strong and concrete reason for all of us to hope. We have to do some of the work. True, most of us are not researchers and most of us can't even begin to fully understand the work being done or its challenges. We can make a difference tho. Our efforts, individual and combined can be very powerful.

    So, what are you going to do to help find a cure?

  3. #93
    Will everyone please stop the off topic posts? I have cleaned out the ones I consider having nothing to do with Hope for restorative therapies.

    Thank you,

    John
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  4. #94
    Senior Member spidergirl's Avatar
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    Quote Originally Posted by john smith
    Will everyone please stop the off topic posts? I have cleaned out the ones I consider having nothing to do with Hope for restorative therapies.

    Thank you,

    John
    Thank-you John.

  5. #95
    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
    George,

    Please accept my heartfelt gratitude for your wonderful post. Your vision (and that of others such as Christopher Reeve) is what gives me the courage and energy to keep going.

    Wise.

  6. #96
    Wow George...

    You have brought tears into my soul and i weep. I weep knowing that we will beat this terrible injury that is not only tearing us apart, yet tearing our loved ones into pieces as i am positive my father would *give anything* to just have one more dance with his daughter. I know it is killing him, therefore all my efforts to walk again most likely stem for him to be able to accept me and he can not do this, i am his youngest daughter and he believed i could do *anything* i set my heart to do... Well, life handed me this injury and i will always do whatever it takes to overcome it. I am currently 5 years post and i will always fight with courage knowing that it will never been in vain.. Godbless your heart, i needed a good cry.

    GODSPEED FOR A CURE!!!!!!!!!


    Steven, i don't want to bring up what you said to me regarding Dr. McDonald, i refuse to go this low... However, i will forgive you but it is difficult to forget such vulgar words. I want/need your help so i will let it go, k. I am certain you know of what i speak of, please do not act stupid becasuse you simply are not.

    Great moderatoring skills.. Ok, i also will get back on subject. George just blew my mind and i think we need him more than he will ever need us.. xxx

    Lets go find a cure *together*!!!!!!!!!!
    Godspeed~
    Susan
    www.sciwalker.com

  7. #97
    Quote Originally Posted by 1966stoneguy
    efkaristo, para poli. a po tho, sto ourano.
    1966stoneguy ~ Να εισε παντα καλλα, εσει και η εικογεννια σου, και ωτει επειθιμισ. Σιγγουρα θα παννε ολλα καλλα. Να το πηστεψις αυτο.

  8. #98
    Banned adi chicago's Avatar
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    Quote Originally Posted by Agios
    1966stoneguy ~ Να εισε παντα καλλα, εσει και η εικογεννια σου, και ωτει επειθιμισ. Σιγγουρα θα παννε ολλα καλλα. Να το πηστεψις αυτο.
    wow ...aliens invasion.i need one to cure sci.[nacked aliens nurses and no males doctors around me ].
    • Dum spiro, spero.
      • Translation: "As long as I breathe, I hope."

  9. #99
    Quote Originally Posted by manouli
    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.
    Οπα Μανουλλι μου Λεβεντι! Χεριτιζμους! It's great to see the Greek boys being politically active and fighting the good fight. I also love reading your posts. You always seem to find the best articles. Stay strong!

  10. #100
    Quote Originally Posted by Lindox
    Agios,
    Your writing is exquisite.
    Thank you for sharing with us.
    I hope your post becomes a community sticky.
    Lindox, Thank you so much. It was all from the heart and I felt comfortable sharing my feelings and experiences with you all.

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