Huntington Disease Lighthouse Families

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HERE IT IS .... HD BUZZ POSTED UPDATE

Posted by skmf12 
HERE IT IS .... HD BUZZ POSTED UPDATE
June 27, 2017 03:25PM
THIS IS THE BEST NEW HOPE FOR OUR PEOPLE :

Got alot of good stuff coming out since the HD Convention this weekend...

[en.hdbuzz.net]
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
July 01, 2017 03:41PM
Encouraging news, indeed!
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
November 09, 2017 11:35AM
October 15, 2017 there was an update on hdbuzz. Hope you saw it.

Very encouraging, open label extension on the trial !!
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
November 13, 2017 04:38PM
I was screened a week ago for the Signal gene therapy trial at Duke. It will last nearly two years if I'm accepted. I think I have a good chance. I've aged out of many trials, but not this one. Age 71 was no problem!

Will
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
December 10, 2017 07:33PM
YAY !!!! Way to go will........... I'm your cheerleader

Let us know how it all goes thru the process will ya?
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
December 10, 2017 07:35PM
Oh I missed that Tyler... I have to go check that out... thank you...
Good one!
PK
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
December 13, 2017 11:39AM
Did u see the news that the drug trials in England are finished. What does that mean for the folks here.?
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
December 13, 2017 05:03PM
Patience will be needed. A much larger trial will start in the US to support the European results. When that is successful, the FDA will approve a roll-out. The very good news is that Roche's money is behind this.

Will
PK
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
December 13, 2017 07:46PM
Will,

You said the trial that you are participating in will be going for 2 years?
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
December 14, 2017 08:07AM
Actually it will be 18 months after screening. If accepted I'll be in Cohort B. Here's a brief description. The consent document ran 25 pages. [huntingtonstudygroup.org]

Will
eve
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
July 15, 2018 03:55PM
Please keep us updated, Will. I know you will! Good luck and thank you for doing this!!!
eve
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
July 15, 2018 04:14PM
Is anyone able to explain the differences between the drug being studied in the Signal study and the Ionis drug?
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
July 15, 2018 04:37PM
Eve and All,

I've had my third monthly infusion of the Signal drug or placebo. 15 more to go. No spinal trap required - just an injection. The Ionis drug is gene therapy to fix the gene. The Signal one that I think I'm getting is a brain drug that is designed to work on symptoms, not the ultimate cause.

In the first cohort it increased brain size measured by MRI scans and brain activity measured by PET scans. I think I might be getting the drug because of a harmless side effect often caused by prescription drugs. The only one I'm taking is the Signal one. I've reported it to the study folks.

Will
eve
Re: HERE IT IS .... HD BUZZ POSTED UPDATE
July 18, 2018 09:58PM
Thanks Will for answering my question and for being involved in research. I hope you are receiving the drug and also hope it works well
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