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Thread: Getting ready to take a big step...

  1. #1
    Join Date
    Nov 2006
    Rochester Hills, MI

    Getting ready to take a big step...

    Hi all!

    It's Thursday night and I'm winding down and getting ready to hit the sack. I have to work Friday and Saturday. I'm spending Sunday packing and mentally preparing myself for what may be a big step forward in dealing with my disease.

    On Monday morning, I'm flying to the National Institute of Health in Bethesda, MD. I will be participating in a new study that will hopefully lead to a new treatment for Late Onset Tay-Sachs disease. This is the beginning of the first step of the study. This is pretty much data collection that will be used to develop outcome measures that are needed in order for the FDA to approve any kind of treatment.

    This stage of the study will last about six months I think. The other ten or eleven participants and myself will be wearing data collection devices that will relay data back to the researchers. When this portion is done, they will hopefully have the treatment ready to test. It is pretty scary, because it is currently in animal testing. If that goes well, we will be the first people to try this treatment. It is going to be gene replacement therapy, that will hopefully at least slow the progression of the disease, if not reverse it.

    As I said earlier, this is pretty scary. But somebody has to do it if we ever hope to find a cure. I am willing to give it a shot. It may be too late for me to be cured, but I'm hoping that the data I provide might help someone down the road in dealing with this horrible disease.

    I'll be bringing my laptop with me and I'll post some updates while I'm in Bethesda.

    Take care all, and have a great weekend!
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  2. #2
    Join Date
    May 2007
    Kansas City, Missouri
    John I hope you have a good trip and all outcomes are all good. It sounds like a promising study and good on you for going for it. I look forward to hearing how it goes.

    To a small child, the perfect granddad is unafraid of big dogs and fierce storms but absolutely terrified of the word “boo.” – Robert Brault

  3. #3
    Join Date
    Aug 2007
    Reno NV
    Hey, Best of luck John! Definitely keep us posted!
    Programmer - An organism that turns coffee into software.
    If all your friends are exactly like you, What an un-interesting life it must be.
    "A door is what a dog is perpetually on the wrong side of" Ogden Nash

  4. #4
    Join Date
    Jul 2011
    The Gorge Area, Oregon
    Good luck John!

    Thanks for being brave enough to go forward; that takes a ton of courage but the possibility of so many people being helped is huge.
    Love thy neighbor, yet pull down not thy hedge.

  5. #5
    Join Date
    Jul 2009
    Amherst, New Hampshire
    That sounds so exciting and promising. I'm very happy for you.
    I hope all goes well and that there is a light at the end of the tunnel for you and others.
    Faith, Hope & Charity

  6. #6
    Join Date
    Jan 2009
    Thoughts and prayers are on your way. Very courageous of you and your undertaking. Best of the best to you.

  7. #7
    Join Date
    Nov 2006
    Constantine, MI
    Prayers and hope for the best possible outcome.
    “We all die. The goal isn't to live forever; the goal is to create something that will.” - Chuck Palahniuk

  8. #8
    Join Date
    Apr 2009
    Outside the beltway
    John, you'll be right down the street from me. Are you staying in the hospital , Just remodeled. If you can get out you are welcome to come spend some time at the shop. We are 15-20 minute drive up the road.
    I dream a lot. I do more painting when I'm not painting. It's in the subconscious.
    ::: Andrew Wyeth :::

  9. #9
    Join Date
    Mar 2015
    Parker County, Texas
    John, good luck with this endeavor! You are tough and brave to do this. All the best to you!

  10. #10
    Join Date
    Feb 2007
    North West Indiana
    John, what a big step! Congratulations on being courageous and willing to participate in this study. You and your fellow participants will be helping people far into the future that aren't even dreamed of at this time. I applaud you for your generous use of your time and body. May you have a wonderful trip and it become fruitful for you and the researchers.
    God and family, the rest is icing on the cake.

    I'm so far behind, I think I'm in first place.

    Premier Bovine Scatologist


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