Richard

I have general information about an ALS diagnosis…

Just a few thoughts about the post ALS diagnosis and working with your physician or ALS clinic:

1. Be assigned a case manager, a point person. Someone who reaches out to you, navigating you on what to do, when to do it and how to do it.
2. Be provided an ALS primer. ALS introduction paperwork…[Read more]

NJGuy, I agree with you when you say: “trials take their own pace.”

Here is an example: On December 24 2021, there was this news story that said the following:

“Japan’s Yamagata University said Friday it has found that a drug being developed for the treatment of Alzheimer’s is also effective in treating amyotrophic lateral sclerosis, more…[Read more]

Never!

The ALS associations responsible for getting-the-word-out about ALS are failing.

Richard

Hi Azizullah,

This website may have the information you need about participation:

https://www.als.net/pmp-enroll/

Richard

Hi Maya,

Here is a brief video from Dr. Bedlack on ALS disease progression:

See other short informative ALS videos at this location:

https://www.youtube.com/c/YourALSGuide

Richard

Hi Carol,

My pleasure 😊

One more thing…When trying to find the latest ALS treatment news, Google searching on ALS treatments can return an uncountable number of results.  A lot of the returned results can be years or even decades old, basically useless information.  In order to see the latest and greatest ALS treatment news you can try one…[Read more]

Hi Carol,

My first symptom was right hand weakness in November 2019 and I was officially diagnosed with ALS in September 2020. Currently has spread to the right arm and left hand and arm.

My ALS ”support team” gave me no guidance or reference points. They basically just said that I have ALS and sent me on my way. So, for rec…[Read more]

Navigating Clinical Trials With ALS: 8 Things You Should Know

Navigating Clinical Trials With ALS: 8 Things You Should Know

Richard

After Being Diagnosed With ALS 

Just a few thoughts about the post-ALS diagnosis and working with your physician or ALS clinic: 

1. Be assigned a case manager, a point person. Someone who reaches out to you, navigating you on what to do, when to do it and how to do it.
2. Be provided an ALS primer. ALS introduction paperwork or at least an i…

[Read more]

Yes, I think advocating for pALS is helpful. However, what people CAN do is very different from what people WILL do,

Before I mention my advocacy involvement I want to emphases my frustration with the ALS organizations and foundations which I feel are not leading the ALS advocacy charge. Let me give two examples of obvious failures on their…[Read more]

I have not reached out to any Soccer organizations about the suggestion of having an ALS day for a famous soccer player.  Since I have no clout, I did email the ALS Association about this topic.  As I expected, I received no response from them.

If someone has more influence than I have, then I suggest they make an effort and take on the r…[Read more]

Thanks Jean-Pierre, you answered my question.

Richard

If past history of so-called ALS treatment breakthroughs are any indication of any possible future ALS treatments, then this too will fizzy out into obscurity.

Richard