During my ALS diagnosis which consisted of two EMG’s, two MRI’s and a blood test for diabetes, the neurologist never mentioned a blood test for pathogens, the doctor did state you probably have Lou Gehrig’s Disease, which there is no known cause, no cure and only limited treatment options. Wanted to know if anybody got tested by… Read more

Added thoughts, football/soccer players have higher rates of ALS: close contact with mycotoxins in soil fields. Higher levels of ALS with military personnel: biological/fungal weapons were used in Iraq. As far as living far from a waterway and still getting ALS, whole colonies of bacteria/fungi can travel within air currents. Again I’m… Read more

Hope everyone is well, I know personally how challenging ALS can be! Wanted to leave you a link regarding mycotoxins, within the link there will be 4 sublinks in black. Best to start the earliest sublink and move toward to the most recent article. This topic has been brought up before and mycotoxins/fungus need to be taken serious as a… Read more

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… 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… 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… 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… 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,… 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… Read more

Lou Gehrig Day Singer!

https://www.nbcnewyork.com/news/local/nj-musician-living-with-als-set-to-sing-at-yankee-stadium-for-lou-gehrigs-day/3077339/?_osource=db_npd_nbc_wnbc_eml_shr

Global ALS Day June 21st! Did you know? Global ALS Day in June!

https://www.alsmndalliance.org/global-day/

https://www.alsmndalliance.org/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… 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… 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… Read more

Hi Everyone, It may or may not be new knowledge, but have a theory about theo Possible or probable causes of ALS. Why are most of the large ALS clusters in the USA in the north near the Great Lakes and in the North East? Well, I have a theory or there is a theory?

Looked at maps of ALS distribution, these clusters are near water, I then… Read more

I’m switching any donations on emails etc.. away from the ALS association until we see more tangible results from them!

Hi Amanda, Thank you for bringing up the topic about advocacy and ALS awarness! Richard and I have been working closely sending dozens of emails to media outlets, philanthropic organizations and posting on social media. Richard has already sent a list of emails and an email template here on the forum anyone can use! Even a few people… Read more

Hi Everyone,

Anytime is a Great time to get involved, but especially during ALS awareness month! And there’s of course still plenty of time to get involved this month! Spread the word about May ALS awareness month on social media, contact your local news or state representatives and even send e-mails to national media outlets. Anything you… Read more

Hi Everyone, ALS month is a Great time to spread ALS awareness! Richard ‘sparked this recent initiative and Dagmar as usual is actively engaged. Dagmar has done so much over the years for ALS, Dagmar and Amanda are such Heros!

You may ask what can I do as a forum member to spread the word about ALS month? The answer is lots!

#1 Copy/paste… Read more

Hi Everyone, I’m with you on this Richard and will start emailing very soon after writing a template email and also knowing where people (non-pALS and pALS) should/can donate? I’d rather people including myself Not donate to any big pharmaceutical companies or companies affiliated with them. Many pharmaceutical companies are already… Read more

Hi, Wanted to mention, Since it’s ALS awareness month. Thought people here on the forum including myself could also post on various social media sites the Interactive ALS flyer, sites like FB, Twitter, Instagram, Tiktok etc. For instance I recently posted a photo not related to ALS a few months ago on ‘imgur and it got 157,000 views within… Read more

Richard your Correct, not enough people are aware of ALS! Really Surprised only a few States/Governors have declared May an ALS awareness month! Although, I’ve been living abroad for many years, would still submit the ALS Information to local news and radio stations in Florida where I grew up and would look into submitting this info to… Read more

If there is any article/trial which states Sodium Benzoate can be neurotoxic, I’d definitely stay away from Sodium Benzoate! Looks like Tudca and many other supplements have shown ‘Promise with slowing progression! Best stick with the supplements that have some solid foundation within trials and light exercise (my opinion)! Thank you Isabella… Read more

Think what Richard implied was doctors should concentrate more on quality of life, not only longevity. The question wasn’t ‘What is quality of life with ALS, that can be objective, different from person to person! Quality of life.. As for myself, I was very active swimming, hiking in mountains, daily walking in the park, exercise at the gym… Read more

Yes, Ketamine is a very serious drug. It’s very clean feeling, very, very hallucinogenic and can have out of body experiences! Some of these trials are ridiculous, like the researchers are just trying any substance. Hope these trials don’t cost too much money! Doesn’t seem like ketamine would slow any ALS progression, But Not sure how… Read more

Hi Richard, Your definitely doing overtime, with your research into ALS. All the articles are Very Very Appreciated! The last article hit home, as the article stated injury/infection plays a role with ‘astrocytes resulting in miscommunication/dysfunction. At first I was thinking air/traffic pollutants day after day ‘Could have caused ALS,… Read more

Interesting! And Thank you ‘Dagmar for passing on that information/article! Lots of research and trials have been going on, how effective many are in slowing down symptoms is questionable; But very good to see progress is being made! We definitely need good news! It’s been known mitochondria (dysfuction) plays a role in ALS. Would be… Read more

https://grantome.com/grant/NIH/R03-HD078447-01                                                                     Above is the link to a Study with Sodium Phenylbutyrate (used in Amx0035) and Sodium Benzoate. The results of the study are on the page toward the bottom, click. If the link doesn’t work, I’ll repost it! Keep in mind, many of these… Read more

Hi, I’m new to the forum, but have been reading a few articles from the forum over the last month, very informative! I’ve had ALS for two years now, it’s been difficult for all of us! I’m glad I can still walk abit (with walker) and have the use of my arms and using noninvasive ventilation at night now. Staying positive and not stressing out is… Read more