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jethro

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yesterday announced:
Press Release - BrainStorm
any comments?
i negotiating with israel. today i will translate documents and i'll send it to israel.
if they didnt change conditions...
 

KarenNWendyn

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Is anybody from this forum participating in this trial in the US?
 

KimT

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I'm too old.......
 

Nikki J

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We had someone whose spouse was in an earlier phase. She has not posted here in a long time but fairly recently I heard she was posting on FB and he was still living.

If you happen to be FALS especially c9 or SOD1 please know any stem cell treatment will disqualify you from the antisense trials ( at least it has so far)
 

Nikki J

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The argument about access from places like Montreal to Massachusetts does seem reasonable and I am glad they are doing this. I wonder whether in practice there will be a geographical limit. If a person from the far Northwest asked, what would they say?
 

ShiftKicker

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Nikki- I assume they could, provided they were mobile (and financially able) enough to make it to the study location?
 

Nikki J

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Some of the trials want you to be able to get back to the trial site in a reasonable time frame if complications ensue. If you can be closer for the duration then it isn’t an issue

I don’t remember the trial as she did not do it but there was something my sister looked at where she was too far. It was not a matter of good medical care being available or not but the trial site. I have seen geographically accessible in trial criteria at times
 

KarenNWendyn

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I researched this a bit more. Criteria include age 60 or less, ALS symptoms less than 2 years, SVC >65%, no feeding tube or BiPAP. No recent Radicava.

Study requires about 14 visits over about 2 years. They are still enrolling. Centers include 3 in California (SF, UCI, Cedar Sinai), two in MA, and Mayo in MN.

I have a call out to the center in SF for more information. I think I meet qualifications. Would I be a fool to pass it up?

Jethro, thanks for starting the thread.
 

ShiftKicker

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Karen, if you feel up to it and it wouldn't be a huge burden to travel or cause you too much fatigue, do it! Their criteria (< two years symptoms) is small. That's symptoms, not diagnosis. That cuts a huge number of folks out immediately.
 

Nikki J

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Ironically one of their earlier trials in 2014 also insisted on symptom onset more than 1 year which I did not have then. Yes if you are SALS and not chasing gene therapy I agree with Fiona. Good luck!
 

KimT

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Karen,
If I qualified I would do it. You seem like the perfect candidate. Plus, SF has the best food ever!
 

KarenNWendyn

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Jethro, sorry to sort of hijack your thread. :-(
 

KarenNWendyn

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I talked extensively today with the study coordinator at the San Francisco site. I will start a new thread in the drug research sub forum in case anyone is interested in this study.

Also a correction to one of my posts above— the study requires 14 visits over 11 months.
 
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