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Nikki J

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PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
They are not recruiting yet. If you qualify keep an eye out though
As you can see the criteria include symptoms under 36 months and ability to swallow the pills. Also no severe cardiac issues. There will be 12 sites

Retigabine is an epilepsy medicine. It was found to help in a study using IPS cells from PALS and people with the genetic mutations that cause fALS. Essentially it made the cells less irritable. My sister has been taking it off label. She is in somewhat of a plateau. I don't know that there is causation here but I hope so

ALS Clinical Trials | ALS Therapy Development Institute
 
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>There will be 12 sites

houston?
 
None in Tx, Max. Closest to you (and me) appears to be Az.
 
>None in Tx, Max. Closest to you (and me) appears to be Az.

:-(

thhanks, greg!
 
Nikki,

Thanks for posting this. I see that one of the locations is Cedars-Sinai. I'll watch to see when they open it up and see if I can jump into that one.

Michael
 
Interesting, the als clinics tell you to get a feeding tube before you need it yet that eliminates you from many trials. Why should they care if you have a feeding tube if you can eat by mouth. For that matter, why should they care anyway as the medication can be delivered by the tube. More crazy rules...
 
Not sure if they changed the wording or I hallucinated it. It does not say the no feeding tube now. Just the swallow pills. Editing post
 
Oh I got the no feeding tube fron the alstdi write up that linked to the page I posted. So maybe it is correct after all
 
NEALS had a webinar on this a couple of weeks ago just had time to watch it. They said no feeding tube there. A few other things. Worth watching I think
https://vimeo.com/125245254
 
I think the second link is outdated info. The contact person is no longer there. She left almost 2 years ago. But the samples gathered in the study were used in the research referenced in the first link. My sister and I were in that study

Update. Study is still ongoing. They told me they are updating the contact info so you can get in touch with someone
 
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Absolutely stupid about the feeding tube. I can take all nourishment and pills orally, yet would be excluded from this study. Do these idiots even know what they are doing when they make these rules up or that thay go against the recommendations of the ALS clinics?. I think Ill go out and get a double cheeseburger and fries to satiate my anger.
 
>I think Ill go out and get a double cheeseburger and fries to satiate my anger.

first bite for me! :) .... been 16 months so far, only lost 8 lbs :)
 
Max--
been 16 months so far, only lost 8 lbs

That's great! Good to hear. We're keeping your daily "menu" on hand here, to implement as needed. :)
 
>That's great! Good to hear. We're keeping your daily "menu" on hand here, to implement as needed.

:) and I run the dogs 5 mi a day :)
 

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