Treat Us Now

[Shane the Pain]

Dear Fellow ALS Patients, Friends and Family,

I think we really have a chance here to make change within FDA and the pharmaceutical companies. The premise is this: we know ALS is a killer so why not put drugs in the hands of patients Now...

If you agree with this premise, please click the web address below and sign the petition to help make this happen ! If you have already signed the petition, thank you...would you please use your social media to get others to sign ? Right now we only have 2,200 signatures. I would think that any US ALS patient would sign this...that would be about 35,000 signatures...Please Help.....Thank You !

Fight On,
Shane the Pain

 

[Sequoia]

We have now reached the 2500th signature....I have posted on my FB page and Treat Us Now! FB page and from that in 10 days 250 have signed. So please post on FB and Twitter and blogs. The more signatures we have the more influence we will have....

Make ur dream come true: that we may live longer to see a cure!

 

[penney21]

Hi sequoia,
i,m new to the sight. My brother was diagnosed with als in oct. 2011. I signed the petition. Can you tell me what the next step is after you get all the signatures.
Thanks.
Penney21

 

[Sequoia]

Penny WELCOME to the Forum! We are now writing letters to our local ALS Associations, and to Drug companies/FDA to try to get them involved, and there is a Pilot 1 initiative for people who want to petition their neurologists for compassionate early access to these new drugs that seem to slow the progression down. Our dream is that pals will live longer to see a CURE! If you would like to help us, we need all the folks we can find because there is alot of work. I wont post our email on this post because this will go to the moderator for approval but I will post it below. Look for it.

 

[Sequoia]

We have reached 3000 signature!

 

[penney21]

Hello everyone,
i am new to the forum. I heard some news today from a reliable source that there will bo no new phase 3 dex trial this spring. This is horrible.people can't wait this long.i'll do whatever i can to help.

Penney21

 

[Alyoop]

What's your " reliable source"

 

[penney21]

alyoop
it was a nurse from a neurologist office.

penney21

 

[Alyoop]

I wonder what the reason is. If I remember rightly, they were going to test a higher dose. If they are delaying the new study then that's a blow, but if they are not doing it, I suppose it could mean that they feel the data analsis shows the dose they have is ok, or there are side effects that are dose limiting, who knows.

 

[Sequoia]

Penny, if you want to help us get early access to new treatments, we sure could use your help as lots of us have ALS and it is difficult to do much
with the fatigue...We sure would welcome you aboard the Treat Us Now! Train

 

[HelenL]

Aly, I hope what you say is the reason for not going ahead with another 3rd phase... I think there's a better chance of it getting to market quicker if they weren't doing another phase that would probably extend it another year out. Not good for people who may have qualified for this next phase obviously.

Sequoia, you are tireless and amazing! I see you all over FB and here, keep it up! If I weren't so busy with working nearly full time and trying to sell my house, I would join you. Maybe when the dust settles down in my life I will be able to.

 

[Dancer]

I have heard from a provider the same news with year end or early 2013 start. Was also hoping for that trial.

 

[Sequoia]

I have just noticed that David is going around editing any emails and even our petition....so that means if anyone wants to get in touch with us, they have to do it through visitor message or private messages....

 

[KellyGirl]

Do it on Facebook Sequoia......anything I can do to help I will....

 

[Sequoia]

Thanks for the offer of help! You are a good friend! I am all over FB!
((hugs))