drugs

  1. G

    Ivermectin for non-familial ALS?

    Hi all, this is my first post and sorry if I ramble a bit. This will also be quite long because I want to make sure you get all the information I have. And obviously it would be nice for people to continue their own research and add to the knowledge-base! I have a family member diagnosed with...
  2. D

    Question about drugs and sleepiness

    Hi all, I have a question that I will bring up on the next doctor visit but thought I would maybe get some insight on here. Dean is on the following - Aricept 10mg, Primidone 50 mg, Zoloft 100 mg, Amitriptyline 10 mg & Rilutex 50 mg. He seems to be sleeping to much meaning most of the day...
  3. notme

    New Law Enacted Yesterday

    Congress Passes Bill to Expedite Approvals of New Treatments for ALS Dear Patricia, The House of Representatives this evening passed critical legislation that will help to speed access to new treatments for people with ALS! The House vote to reauthorize the Prescription Drug User Fee Act...
  4. Sequoia

    Stock holders meeting with Robert Blum the CEO of Cytokinetics

    We have a narrow window of opportunity to tell Robert Blum the CEO of Cytokinetics how important it is for them to pursue accelerated approval for CK 357. Dr. Janet Woodcock has expressed personal interest in CK-357. Doctor Woodcock is the director of the Center for Drug Evaluation and...
  5. Sequoia

    Neuraltus CEO and volunteers in DC last week

    Andrew Gengos, Neuraltus CEO, along with a leader (Tom Murphy) and member (Michael) of ALSTUN...ALS Treat Us Now, spent 3 days this week on Capital Hill, speaking mainly with key legislative leaders. Andrew Gengos had a very consistent and strong message at each session paraphrased as follows...
  6. Sequoia

    What is true ALS advocacy?

    We want today’s ALS patients to have a shot at being the first ever to overcome their disease. That’s a lofty goal for a population that, since its first identification in 1869, has never once had a treatment known to be effective at stopping or even significantly slowing the disease’s rapid...
  7. M

    Unexplained silence regarding possible ALS risk factors & prevention

    A big hello to everyone on this forum, :smile: I'll keep this post as simple as I possibly can. I personally do not know anyone who suffers from ALS (Lou Gehrig's Disease), and I don't suffer from it either. What got me interested about ALS is very simple. I heard about it, and started...
  8. S

    Pramipexole 22.5ml twice a day

    Dear ALS family and friends, A guy I know lives up in Long Beach CA area is taking this Pramipexole 22.5ml twice a day and he can't talk so good and his wife is his primary caregiver and doesn't have alot of time for fool questions from me... So I was wondering if any of you brainiacs knows...
  9. notme

    Help, Guys please

    Hey Guys I'm over here because the stuff going on seems to be all UMN related, and I'm hoping you all might be able to tell me what to do. My legs are going nuts. To the point I seriously just want them to die. I can't stand it. I've taken 40 mgs of Baclofen every few hours for days. (And am...
  10. Sequoia

    Cancer trials, no Placebo used, how about no Placebo for ALS patients?

    How about giving PALS the same benefit that the cancer community enjoys? Eliminate the placebo arm. Heck you can use data from current trials of other ALS drugs where there is a placebo arm...if those patients continue to disintegrate when compared to Gilenya patients you have ample...
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