Jim

Hi,

Without advocacy nothing would get done, Congress would do nothing, fund nothing, without pALS and their families involvement. Advocacy is essential for progress! Ask yourself, Is there enough funding for ALS research? Are there enough people involved in advocacy and awareness? Do you see any commercials on tv about ALS? Are businesses with…[Read more]

Hi Richard, Thank you for your knowledge and insight regarding Global ALS day on the 21st and your Awarness! How important it is to stay active with global ALS groups sharing treatment options/research, awareness and support! I’ve already reached out to the ALS Global Alliance, about contacting a couple government health departments in major…[Read more]

*Jean Rouzic you are a valuable asset here and the words you text about open many doors!

*Dying-back axonopathy, Wallerian Degeneration and Compartmentalized Microfluidic Devices.

“Axonal regeneration and sprouting as a potential therapeutic target for nervous system disorders Marshall KL, Farah MH – Neural Regen Res”…[Read more]

Hi Everyone, Just completed a few important forms online at below link. Just filled in my name, so quick! “Iamals” really already did all the hard work! I took action on the ‘Promising Pathway Act and ‘AcceleratIng Access for Critical Therapies for ALS. The website is really Fantastic, well organized and very easy to navigate through! Take a look!…[Read more]

Hi everyone, Wanted to tell you I had a childhood friend in Florida, even though we lost touch with one another, I still heard about his wife passing away a few years ago. I looked her name up on the internet. She passed away from ALS. Her obituary overall says “She was a wonderful mother to three small children and she put up a noble fight, her…[Read more]

Will Lou Gehrig Day inspire people to donate and garner awarness, surely hope so! Will hearing that he was the Luckiest man alive spark understanding, empathy or compassion, hope so. Will seeing pictures of a man who lived decades ago still bring out emotion in people enough to make a change for ALS. I certainly hope so!

Do think people should…[Read more]

Lou Gehrig Day Singer!

NJ Musician Living With ALS Set to Sing at Yankee Stadium for Lou Gehrig’s Day

Global Day

Lou Gehrig passed away in 1941. His wife Eleanor passed away in 1984. Do you think they would be impressed that 80 years later, No known causes, No effective treatments and No cure! After 80 years!

Thank You Jean Rolzic! Hopefully I got that correct, JP Julien..
Upregulation of INQLN2/Ubiquilin-2 are linked to pathology, mutants can form cytoplasmic aggregates. This Upregulation contributes to pathogenesis through NF-kappaB activation by p38 MAPK signaling.. Another words Inflammation.

May have to ‘Plea The Filth Amendment” right to remain silent rather than incriminate oneself! with that one Theory, but just passing on other people’s research/theories!

Parkinson’s disease drug for ALS, Dopamine Agonist. Looks again promising! or another false claim.. Ropinirole/Requip

“Parkinson’s disease drug proves effective against ALS in Japan research using iPS cells – The Mainichi” https://mainichi.jp/english/articles/20210521/p2a/00m/0sc/046000c

Just posted an article on Requip, see topic on Requip has already been discussed, Hopefully won’t be posted twice! All the Best

Hi, Certainly trying to spread the word out to non-pals. Lots of automatic responses, wrote from a Governor to the National News and working my way up from Florida toward New York with local tv news stations. Wrote between 40-50 emails, that’s a start! Got a wonderful, thoughtful reply from a reporter in Kentucky, but he thought I was personally…[Read more]

Hi, Don’t think we are pushing anyone to get more involved in different ways, we are simply ‘Asking for more help to get the word out in areas which haven’t gotten any or not enough coverage!

It’s difficult to expect pALS to do this alone as so many of us die within a few years or less after diagnosis. Actually, as we know intial diagnoses takes…[Read more]

Agree Richard, Can we get Bionews to help spread the news about ALS further? Into National News and other Media sources to non pALS. There is so much which needs to be done! Bionews definitely has the partnerships and resources!

1. “Advocacy – BioNews” https://bionews.com/advocacy/

Hi, If we can’t find an existing celebrity with ALS, which there aren’t too many huge names celebrities right now, why not make one. What about having a young girl with ALS our spokesperson? Someone like 8-12 year old ‘Kennedy Arney. ALS is hitting younger people more and ALS numbers are increasing. We could email Kennedy Arney, see how she’s…[Read more]