Richard

I get lots of emails from various ALS organizations about May being ALS awareness month.

However, in the past, CNN and Fox news carry no stories about May being ALS awareness month.

A greater effort needs to reach the non-ALS community about May being ALS awareness month.  How about these various ALS organizations putting together a…[Read more]

…and my opinions must differ from both yours and Dagmar’s opinions because my posts/replies don’t get posted or are deleted, with no explanation of why.

Perhaps all the ALS associates should find a soccer star who has/had ALS.  Since soccer has 3.5 billion fans and baseball only has 500 million fans.  Rather than referring to it as Lou Gehrig’s disease, refer it to a soccer player, then maybe that would bring ALS more attention.

Rich

Kathy, I agree with you 100 percent!  I knew nothing about ALS until I was diagnosed.  A greater effort in awareness is needed.

However, it is pitiful that it took the Baseball profession 80 years to support ALS awareness in the name of Lou Gehrig.  June 2nd 2022 should be the 81st recognition, not the 2nd.

Thanks for your input…very informative!

Go into Google search and enter “May is ALS Awareness Month” with a date range of May 1 2021 to May 31 2021.

Very disappointing results!

No major news outlets were listed in the first 5 search result pages.  Just a lot of local outlets. Absent are CNN, NBC, ABC, CBS, OANN, Fox, Newsmax and all the major newspaper’s webs…[Read more]

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]