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Thread: We Need your help!

  1. #1

    We Need your help!

    My son was diagnosed with SMA Type 1 (Spinal Muscular Atrophy) on June 12, 2009. He is now 6 months old and will not see his second birthday without treatment. I have been following the work of Hans Kierstead and a google search led me here. He is very close to starting trials for his stem cell treatment but needs some funding to push this forward. He says he needs about 500k to get this trial started and the SMA community is trying to raise money for this. You may be asking yourself why post this in this forum? The answer is simple. This treatment will also benefit you because SMA kids are going to be the first trial for this treatment/cure. Hans believes that THIS IS THE CURE and it will treat many other conditions like SCI and ALS but it needs to start with our SMA kids because quite frankly they are going to die at a young age without some type of cure or treatment. Below are some links if you can find it in your heart to donate. This fund was setup specifically for Hans's work and this trial.

    http://uniteforthecure.com/about/

    Direct Link for Donation

    Thank you for reading and your support.
    Sam Bonsett

  2. #2
    Sam, I'm sorry to inform you, but the FDA just delayed/cancelled Geron's first human clinical trial
    Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
    CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

  3. #3
    Senior Member Leo's Avatar
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    Sorry about your son Sam,

    Good point, and your right if the SMA trial goes well it means our sci trial comes faster. Han's told us that very thing at last years Working 2 Walk event.

    Han's and Geron do work together but are seperate, I have no clue how that works but that's my understanding.
    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."

  4. #4
    Sam, I'm so sorry your family is going through this. If you have an opportunity to travel to the Chicago area next week for Working2Walk, you will be able to speak to Dr. Doug Kerr from John Hopkins. The SMA clinical trial is a collaborative effort of Doug Kerr, Hans Keirstead and California Stem Cell, Inc.. The Geron trial is separate from this research effort.

    Doug Kerr has agreed to update us on this research and explain how it relates to other conditions during his presentation. For those of you with SCIs who require motor neuron therapies, this research applies to you.
    "Our lives begin to end the day
    we become silent about things that matter."
    - Martin Luther King Jr

  5. #5
    Well Donnie, which is it?
    Quote Originally Posted by Donnie View Post
    Sam, I'm sorry to inform you, but the FDA just delayed/cancelled Geron's first human clinical trial
    ______
    Awe at my magnificent coq!

    "You may say I'm a dreamer
    but I'm not" - J. Lennon

  6. #6
    Quote Originally Posted by Donnie View Post
    Sam, I'm sorry to inform you, but the FDA just delayed/cancelled Geron's first human clinical trial
    I just cant understand how they can stop this..........My grandson has sma type 1 and this is the only hope we had and now its gone

  7. #7
    have they cancelled it or just a delay?

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