Welcome to TranslateALS!

I know. People who know me well are wondering…

A blog? Why? Why now?

As I have thought about it a little bit more, I’ve realized that my motivation to create a blog is driven by recent events that have galvanized opposing opinions in the world of ALS. A discussion of which will be be the topic of my first post!

My blog will focus on topics relevant to ALS. Based on the last fifteen years of my life there is plenty here to discuss. I would surmise that I may post some discussion on critical hurdles and advances in drug development and clinical trials as well; even if they are currently outside the realm of ALS with hopes of future application.

Obviously the content will be my perspective, my opinion. Not everyone will appreciate it nor agree with it. After all there are opposing views from various stakeholders on how to best meet the demands and expectations of patients with regards to developing potential treatments for any disease.

I strongly believe that everyone’s goal is to develop innovative and impactful medicines for unmet medical needs. This is especially true for devastating conditions such as ALS where the current standard of care is ineffective. The timing of such access to experimental treatments is where the width of the gray area in these decisions creates anxiety and frustration with the current clinical and regulatory process.

Regardless of these issues hopefully the blog will generate productive discussion.

I will try and be mindful of my skepticism and cynicism covering the questionable, controversial, and sensational issues in the efforts to develop effective treatments for ALS.

Steve

4 thoughts on “Welcome to TranslateALS!

  1. I have reviewed the fungal/mushroom hypothesis article. It does not seem to have just as thorough a non-ALS study arm. How prevalent are these minute fungal molecules in non-ALSers? Needs a wider study?
    SeattleSocrates.

  2. My mom has had ALS for 10 years now. She can not move, speak, swallow etc. She is on NurOwn, specifically approved for stroke patients. It hasn’t helped. She will occasionally blurt out a word, and my dad holds onto the belief the medication is working. I don’t think a word on rare occasion can be called success. It’s used more I feel to give loved ones hope. However, with that said, she recently gained 9 pounds. I’ll keep monitoring her and post. I think this medicine may be much more effective for those with an earlier diagnosis who haven’t progressed further in the disease like my mom. Talk to your neurologist about it and see if he will write you a script for it if you wanna try it.

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