Recent content by helpingpals

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    Update on Emory Stem cell trial

    My apologies I did not mean to duplicate my post. I did not realize the first one was in "limbo"
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    Update on Emory Stem cell trial

    Actually Dr. Glass will be doing the presentation next week in San Diego at the ANA conference. Also CNN may alos be doing a story on the patient who has shown considerable improvement. Far from a cure but at least they are on the right track and showing promise. Remember this the only stem...
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    Update on Emory Stem cell trial

    Update...actually Dr. Glass will be doing the update next week. CNN may also end up doing a story on a patient that has shown substantial improvement. Far from a cure but at least they are headed in the right direction.
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    Update on Emory Stem cell trial

    Wall Street Webcasting - Neuralstem, Inc. If you go to the link and register (it's free) just make up a company name, I just put in ALS, you can listen to the podcast and advance through the slides. The first half of the podcast mostly discusses the trial taking place at emory. At about the...
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    Brainstorm Cell

    I am sorry asantiago I thought you were referring to the patient I was talking about at Emory. My apologies.
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    Brainstorm Cell

    No from what I understand he was in the last group and was done in 2011. It is not a matter of deteriration it is the fact that he showed considerable improvements. You are right there seems to always be a carrot out there that never comes to fruition. I pray that this is not that scenario...
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    Brainstorm Cell

    I meant to say that the secondary outcomes are the efficacy data. The primary outcomes is the saftey data. Both are being measured both prior to the surgery and post surgery.
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    Brainstorm Cell

    Here is the link to the trial on the CDC website as you can see while it is a safety study and that is the primary outcome they are recording and reporting to the FDA the efficacy data. Human Spinal Cord Derived Neural Stem Cell Transplantation for the Treatment of Amyotrophic Lateral Sclerosis...
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    Brainstorm Cell

    trfogey ypu are correct. My apologies. I guess I have been so excited about what I have seen and heard and got carried away. Your other point is extremely astute as well. My understanding is they did go back and re diagnose the patient from the beginning to confirm the original diagnosis...
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    Are you bedridden if you have a PEG feeding tube fitted?

    I agree with Brooksea...clarification is needed as I too have seen numerous patients with PEGS who are mobile.
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    Brainstorm Cell

    I failed to mention that they are hoping that once the FDA grants approval and they move the injections to the cervical area of the spine that they will possibly be able to duplicate the results. As long as they have the FDA's approval they plan to begin the next group at the end of August /...
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    Advice Needed

    Very sorry to hear about this disease impacting your life the way it has. It sounds like you and your previous husband have a solid relationship. I think that you should reach out to him and his wife and be honest. They will be looking for friends, you would be suprised by how many people...
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    Waiting/dreading Dr. DX.... What can I do as a caregiver?

    Very sorry for your diagnosis/ I am sure that there are support groups that your clinic can share with you. If your husband is comfortable with going I would suggest you both attending their meetings. They can be very therapeutic, educational and you will quickly learn that you are not alone...
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    Brainstorm Cell

    I am glad that this is posted. This article is partially while I decided to join this forum. I have been checking it out for a while but have been too nervous to join or post. I am heavily involved with a few ALS groups / associations / clinics etc in Atlanta and other portions of Georgia. I...
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    Where are we?

    As everyone has told you there is no way to no for certain when the end will come. How is her FVC scores? (breathing test) What her FRS (functional rating scale). While neither one of them or nor anything else will give you a definitive timeline it will give you an idea at her rate of...
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