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Thread: Hi folks! I got some good news...

  1. #1
    Join Date
    Nov 2006
    Location
    Rochester Hills, MI
    Posts
    940

    Hi folks! I got some good news...

    Haven't been around here too much lately, I've been busy working and such. I thought I'd give you an update on what has been going on lately.

    I've been doing pretty well for the past few months. I'm still working three to four days a week and it's going pretty well. Work has really helped my physical as well as mental well being. I haven't worn my leg braces in over six months, or used my walker in over five months! My falls have greatly reduced and it's getting easier for me to get around.

    There is a web site called clinicaltrials.gov that I check once in a while to see if there are any new studies being done on Tay Sachs. I checked it yesterday and there was a new one listed. It is a natural history study being done out of Massachusetts General Hospital. The doctor running it is Dr. Florian Eichler, and I have met him a couple times at the annual NTSAD Family Conference. I sent an email to them, and literally TWO MINUTES after I hit send, my phone rang and it was them! We talked for a few, and it looks like I may be headed to Boston some time in November to get enrolled in the study and get started on all of the tests and data collection. This will be the fourth study that I am enrolled in. These studies are collecting data so that they can develop "outcome measures" which are required by the FDA to get approval for any new treatments. They are working on possible gene replacement therapy, but it may be a couple of years away before it's ready. But if we get the data collected now, we can hit the ground running as soon as the treatment is available.

    If this treatment does become available, I will be one of the first people to try it. That is a little scary, but somebody has to do it! We won't make any progress without research. All I can say is that I REFUSE to sit back and let this disease destroy my life without giving it the biggest fight I know how to.

    Thank you all for the support you give me here! I'll keep you updated as things progress.
    "The bitterness of poor quality remains long after the sweetness of low price is forgotten"

  2. #2
    Join Date
    Dec 2006
    Location
    Yorktown, Virginia
    Posts
    5,015
    Great news, John. A new avenue of treatment with lots of promise. Here's hoping it pans out.

  3. #3
    Join Date
    Apr 2009
    Location
    Outside the beltway
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    5,255
    John that's great news, wish and prayers for the best.
    I dream a lot. I do more painting when I'm not painting. It's in the subconscious.
    ::: Andrew Wyeth :::
    colonialrestorationstudio.com

  4. #4
    Join Date
    Dec 2006
    Location
    Independence, Kentucky
    Posts
    1,355
    Glad to hear that you are doing better John, the trials sounds as though they are making headway to finding a cure. I wish you well keep us informed.
    I'm supposed to respect my elders, but its getting harder and harder for me to find one now.

  5. #5
    Join Date
    May 2007
    Location
    Kansas City, Missouri
    Posts
    13,448
    Good to hear from you John. I know from seeing some of our own institute's research that the whole "trials" process has greatly improved and we're starting to see cures come about about twice the speed they used to. A lot of it has to do with the data being more readily available. Also with pre-approval processes allowing trials to go from starting phases to advanced study phases if the starting phases are showing substantial benefits to the trial participants. They used to be pretty hard nosed about approving additional phases to begin until all reviews were done on the previous trials, but again, the data has helped with realizing the benefits and reducing the time that it takes to get cures available.
    Darren

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

  6. #6
    Join Date
    Mar 2007
    Location
    Southeast Pa
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    2,019
    Sounds like a great opportunity. Hoping it works out for you..
    Garry

  7. #7
    Join Date
    Jul 2011
    Location
    The Gorge Area, Oregon
    Posts
    4,699
    Good deal John.,

    Glad to hear you're getting around a bit better - sounds like that job was pretty good medicine all on its own in some ways. Good luck on the clinical trial as well!
    Love thy neighbor, yet pull down not thy hedge.

  8. #8
    Join Date
    Jan 2009
    Location
    Carthage,Mo
    Posts
    886
    Your good outlook will carry you on. Best of luck and prayers for your treatment success.
    David

  9. #9
    Join Date
    Mar 2015
    Location
    Parker County, Texas
    Posts
    1,500
    Hang in there! I'm sure it will happen for you. Best of luck and the best of wishes.

  10. #10
    Join Date
    Jul 2009
    Location
    Amherst, New Hampshire
    Posts
    10,604
    Sounds like the beginning of a new opportunity for new. Lets all hope that it works out for you.

    I'd like to take you out to lunch if and when you get to Boston. Keep us up to date !!!!
    Faith, Hope & Charity

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