Jim

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 getting…[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 feel…[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 a…[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 selling…[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 a…[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 the…[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 for…[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 and…[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 Ketamine…[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, But…[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 extremely…[Read more]