Phase III: Dexpramipexole

[retiredmus2010]

sequoia: I sent you a pm.

 

[entity]

Here is the Treat Us Now! email address.... [email protected]

Hi Sequoia,

I tried emailing [email protected] but my email bounced back. Is this the correct email address? I was also trying to send you a PM but that feature does not seem to be active for me yet (I am a new user on this forum).

Thanks.

 

[Sequoia]

entity...I sent you a visitor's message. I think if you dont have Window's Live it doesnt work....dont know how to fix that. But you are on board!

 

[Alyoop]

Just be a wee bit careful, as it has not Proven to be effective yet. That's what phase 3 is all about. You can't say it's proven to be effective until the end of the study when the placebo arm is compared to the active arm. If they do an interim analysis, then they will have an idea where the study is heading.
I have worked on trials that Drs have been excited about and the study has not been positive.

 

[Sequoia]

The point is to hurry up the process after the drug trials...as it takes 10 years for the FDA to move on it. Early access like what the HIV community did...we are not pushing for unsafe practices....only giving more of us the chance to get these drugs before we are dead.

 

[Sequoia]

Everybody, we have almost reached the 20 for the Pilot 1...If you want to be on the Pilot 2.... PM me with your real name and your email address and I will put you on the list. This is great pals and cals....we are on the move! Thanks for your participation!

 

[TedH5]

FYI - I have been in contact with some highly placed executives and I am not sure if this is common knowledge or not yet but the new plan is sometime in April or May of 2012 to start an originally unplanned phase III B at higher dosages and expanded geographic locations.

While I am happy that they feel so strongly about the drug and that they are exploring the efficacy of higher dosages but this also highlights my frustration with the clincial trial process. Phase IIIB could add another 12 - 18 months to the trial. With the average PALS life span 24 - 36 months after diagnosis these trials can span 2 -3 cyles of newly diagnosed ALS patients and the loss of their battle with this awful disease.

None the less ayone interested in this trial and not already a part of it should keep there eyes and ears open and inquire accordingly.

 

[momap53]

MCG in Augusta, GA is trying to get this Trial by next summer.

 

[TedH5]

MCG in Augusta, GA is trying to get this Trial by next summer.

Do you see Dr. Rivner? I recently traveled there to meet him and his staff and to see if the GA ALS association was providing his clinic there and in Macon witht the support they needed. He and his staff all seemed like good people!

 

[momap53]

Love 'em, Ted! Ms Quarles, our Trial Coordinator is one special lady and is on top of things. She has been a blessing a to our family, going above and beyond "the call of duty." Doc R is a true gem.

 

[Sequoia]

ALS-Treat Us Now! steering committee is asking all those who applied for the Pilot 1 to
reconfirm that you definitely want to continue....so get hold of Ed

 

[andy leopold]

Everybody, we have almost reached the 20 for the Pilot 1...If you want to be on the Pilot 2.... PM me with your real name and your email address and I will put you on the list. This is great pals and cals....we are on the move! Thanks for your participation!

I am truly excited to find you and this forum. My wife and I were told yesterday she has early stages of ALS. She has been a perfectly healthy athletic woman until now I am brand new to this forum as I guess I have had blinders on for a while. My wife would be a perfect fit for this trial. How do I pm you. My e mail is [email protected]. Wait anxiously to hear from you. Thank you.

 

[HelenL]

Hi Andy, I wouldn't recommend posting your email address on this forum, anyone can view it as we've seen recently with forum members' postings and photos being used without permission in a so-called "book".

Welcome to our forum, you'll find a lot of information and new friends here, it's been a lifeline for me. I would suggest that your wife look into clinical trials directly, such as the new Dex trial we've been hearing about, she will probably qualify as she's newly diagnosed. What Sequoia and the others are advocating for, is for PALS that don't qualify for these trials to get a chance to try these meds before approval for our survival. Usually if you've been diagnosed more than 2 years, then you automatically don't qualify for these trials, and that's wrong. I hope to finish out this trial that I'm in and either continue on with the Dex meds for a LONG time, or try another trial that will hopefully cure us all!

 

[OhGosh]

I remember reading some where that all the participants would get the real medicine at the end of the trial. Has anyone else seen this and remember where? Also, I understand that the trial was closed as of Aug. 31, 2011. Does it means their 12 month trial period would end in something like Aug. or Sept. 2012 and all folks would get the real medicine from that time onward. TIA

 

[HelenL]

I'd have to double check, but I think it's in the paperwork we signed near the back... And yes, it's 12 months since the last participant signed, which would make it next fall. I'm going for month 8 in Feb.