1. T

    "Important information" template?

    Hi all, I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.) I know we should probably have compiled such a thing already given that my...
  2. lgelb

    Biogen picks up Ionis SOD1 treatment option

    This is important not just for advancing SOD1 tx, but establishing another case where a smaller firm (where a lot of ALS work is being done) has successfully handed off a therapy to a larger firm. This helps incentivize ALS research. ---- [Adapted from Seeking Alpha] Having seen positive...
  3. S

    1 Year Anniversary of Her passing is Tomorrow

    For those nice enough to follow and comment on my journey of living life with my 2 kids after losing Liz last year just a quick update... All The graduation ceremonies went very well and not one person that we didn't want to show up did. I give them credit for showing some class.. I shared gobs...
  4. Nuts


    I remember my husband telling me early in the course of this disease that when he could no longer feed himself our days of eating out together would be over. He said I should go, but he would not be fed in public. Last night, for the first time, he allowed me to finish feeding him his dinner as...
  5. D

    Masitinib phase 3 !

    PARIS, April 4, 2016 -- AB Science Announces Positive Interim Results from Phase 3 Trial of Masitinib in Amyotrophic Lateral Sclerosis (ALS) (also known as Lou Gehrig's disease) Company to Host Webcast on Masitinib in ALS in the Coming Days AB Science SA (NYSE Euronext - FR0010557264 - AB), a...
  6. B

    congrats to BIGmark

    I have reached a milestone in this forum....500 posts and have not been banished yet:)
  7. F

    Stem Cell trial (Nurown)

    BrainStorm Cell Therapeutics - October 6, 2014 "The completion of patients follow-up in this second clinical trial of NurOwn™ is an important milestone in its clinical development,” stated Dr. Yael Gothelf, PhD, Vice President of Scientific and Regulatory Affairs for BrainStorm. “We are very...
  8. A

    on the road to a therapy for people with ALS

    Hi everyboy, would like to share the following article. Tried to translate it, did my best. Ulrich Bogdan on the road to a therapy for people with ALS 18.09.2014 The neurologist Ulrich Bogdan intends to stimulate the body's own (endogenous) stem cells so that they regenerate damaged cells in...
  9. M

    Questions from our 17 year old son

    We've recently hit another milestone where breathing is becoming more & more of an issue. It's brought a new set of reality to all of our lives and I thought I'd share some recent questions from our son ... - How old are you when you get to heaven? I mean babies die and older people die. Are...
  10. M

    I hate ALS!

    What a week ... the priveledges this damn disease takes away are never ending ... we hit another milestone as my PALs is losing his driving priveledges. I know this may sound small, but it's one of the last things he has. My heart is breaking for him, my boys, his wife, his little ones. Damn ALS...