Dexpramipexole, Dr Apell, and treat a PALS now?

[edjohnson]

To see why the Treat Us Now petition is so important read what Dr Apell says in this announcement that just came in from Google Alerts...all about Dexpramipexole, you may have already seen it, but a new one for me..
Neurology Today: Encouraging Phase 2 Results for Dexpramipexole for ALS Prompt Phase 3 Trial -- American Academy of Neurology

He and I are 180 degrees apart.

He asks does it work? My question would be: For a PALS how much more data do I need?

 

[TedH5]

We need all PALS and CALS to get behind this 100%!

 

[Felica]

I so agree I sent this to everyone I kow with a plea to send to everyone they know. We need to keep it going. We need those drugs now. Praying for a cure
Felica

 

[HelenL]

Ok, not sure if it will do any good, but I put the above link on Ellen's fb page.... go on there and like it! Maybe we can get some more recognition that this disease isn't as rare as it's said to be (in my humble opinion), but it's still as fatal!

 

[lpcarr]

So mad that my husband does not qualify for the phase 3 study. Had ALS too long. They go from time you first had symptoms not diagnosis. Doesn't make sense. Didn't take long for phase 3 to fill up. My pals is on ceftriaxone. He has been on 14 months.
Going off the drug next month. No side effects, we could have placebo. Dexpramipexole so easy to take too. Just a pill, not the central line like ceftriaxone. Treat us now!

 

[EGBAR]

I would be willing to hook myself up to a car battery if it would help. What do we have to lose? Why does it take so long to conduct any type of research, my guess is because pharmaceutical companies have to lawyer up from the all the litigation brought by others. I will be a genuine pig if it doesn't work write down and try something else. Wouldn't it be nice if every other commercial on TV was about a law firm trying to help ALS patient's and their families instead of mesothelioma? Oh wait we don't have anyone to sue.

Sorry I blew up.

 

[susanf]

Years ago (early 80's) when AIDS was a epidemic in gay men, the US government ignored it until it started to effect women and children. Only then research was funded. I think, and this is only my humble opinion, that there is so few of us we just don't matter.

 

[John1]

I'm convinced. I signed.

 

[AveMaria]

Thank you to all who support this petition. Please add it to your FB page, encourage your friends & family to not only sign it, BUT, pass it on!
Fellow PALS and CALS, and dear family/friends. Numbers on a petition speak.

Every month that goes by sees us getting weaker. We don't have years to wait for those drugs.
Our time is now to speak up.

We are larger numbers than you think. Think of how long it took for your diagnosis. So, besides the people officially diagnosed, there are lots of us running around :smile:with this disease. That adds up to more than 30,000.

AveMaria

 

[Sequoia]

Just in case Dexpramipexole ( and NP001) are not made available to PALS under early access, we, The ALS Treat Us Now! Steering committee, is initiating a Pilot 1 initiative to allow early access to Dexpramipexole and/or Cytokinetics CK-2017357.

We invite 10-20 PALS who want Early access to these two drugs to join in this Pilot-1 initiative.

Our goal will be to have early access granted by March 31 2012.

If you are interested in participating and helping, please send us an email with your response to these 4 questions, ...or post your response on this thread.


1-You are willing to spend 1 hour per week, most if not all the time will be on your computer, IPad etc.

2- You are willing to send us your email address and are willing to join a Google group set up to facilitate our communication with other Pilot-1 volunteers.

3- You understand that Early Access probably means you will have to buy the treatment from the Drug company. There is no free lunch. You are NOT committing to purchase, only saying you understand there will most likely be a cost to PALS.

4- You have a working relationship with a Neurologist.

Please post your response and comments/questions on this thread or send your response, or questions to: [email protected]

After 1 week from today we will assume all interested have replied....We will cap at 20 for each treatment,....we intend to have a Pilot 2 if necessary.

Thanks from the ALS-Treat Us Now! Steering Committee

 

[Sequoia]

We have capped at 20 already, so if any of you want to be in Pilot 2 just PM me with your name and email and I will put you on the list.
We are strong when we act together! We must make our voices heard! Get involved as AveMaria said! With social media we can be heard!

 

[Sequoia]

GUESS WHAT? WE DO NOT HAVE 20 FOLKS IN THE PILOT 1 group, some opted out. So if you are interested email us (go back 1 posts for the email)


I HAVE A DREAM: that one day these drugs will be available for everyone who suffers from ALS, so that we can live longer to see a CURE

MAKE MY DREAM COME TRUE: get involved!
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