Jim
Forum Replies Created
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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 blood/urine/lumbar puncture for bacteria/fungus during their diagnosis? This topic of bacteria/fungus has been going on for too long, we need to start testing and possibly start Trials with antimicrobials.
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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 not particularly saying fungus is the only cause of ALS, what I’m saying is it could be a cause and drugs trials need to be performed ASAP!
All the Best, Jim
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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 ALS interests doing enough? Has your state governor declared May or June an ALS awareness month? Have you contacted any news stations, government representatives or made an effort supporting advocacy?
Along with baseball’s Lou Gehrig day, as Richard suggested, a professional soccer player/s would be an important part of advocacy. Advocates like Steve Gleason and Brain Wallach/Sandra Abrevaya with IAMALS have already done so much. The ALS Watchdog group is also pushing some boundaries. We desperately need more people getting involved!
Remember in the 1990’s seeing a movie Philadelphia with Tom Hanks and Denzel Washington. What an eye opener that was for myself and much of the public about HIV awareness. A similar movie about a person with ALS would be another step in the right direction. There has been progress since the Ice Bucket Challenge, but has there been enough progress? It’s been 80 years since Lou Gehrig died and no real effective treatments. It is a horribly complicated disease. Only you can answer these questions and Yes you can make a difference!
Richard, Thank you for the reminder, I’m going to re-send the ALS awareness email letter to national and local news stations again this week!
All the Best, Jim
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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 cities globally, where’s there’s no ALS association/organization. Your correct, ALS has no boundaries, it doesn’t discriminate on the basis of race, ethnicity, socioeconomic status or region. ALS is a global problem and June 21st is an important date! All the Best!
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*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” https://www.nrronline.org/article.asp?issn=1673-5374;year=2021;volume=16;issue=10;spage=1901;epage=1910;aulast=Marshall
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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! Thanks again Richard for originally posting the link. All the Best, Jim
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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 soul is with God and she now Rests in Peace!” She died one year after diagnosis! I’d never heard of ALS until I read about her. What striked me so deeply is that she died so quickly. What an empty space she left behind. And horribly a year or two later I was diagnosed with ALS.
Depending on which webpage or article you read, statistics may differ some. But looks like someone dies of ALS every 90 minutes. Seems like ALS is not as Rare as many think! What is Rare are viable treatment options. And I sure hope you have good insurance, last I checked, these drugs are far from cheap. What has been Rare is Awarness, when over half the American public is still unaware of ALS, certainly hope Lou Gehrig day changed that! We all know thousands of Americans have ALS at any given time and these numbers are growing!
Do you have time to take break? Will you live long enough? My friend’s wife didn’t! It’s Ok to take a day off or a few days off. But keep in mind within that time more people are suffering and have died! When I was in college, I knew the importance of taking a break during exams, but always got back to business pretty quick. So, let’s not think about break time, let’s think about taking action and doing it! Everyday is ALS Awarness day until there is a cure! The below link is a way you can directly be involved in making positive changes! Thank you Richard for originally posting the link. Time is not a commodity most of us can afford! Jim
“Take Action – I AM ALS” https://iamals.org/action/
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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 see the true unfortunate reality of ALS, people loosing their arms and legs, people loosing the ability to eat, swollen, drooling, unable to talk with their own voice saying I love you, people knowing they have no future, many painfully waiting for that inevitable last breath when life leaves their body! For most, ALS is all about loss and then loosing life. The public needs to see that too!
It’s not about being positive or negative, the glass is half full or half empty. It’s about seeing the reality, the truth. ALS takes away all you were and all you’ll ever be. People need to see that also!
What’s the message we want to send to the world about ALS. Do you truly believe organizations are sending the right message and is it enough? Do people still identify with Lou Gehrig? Is the Government funding enough? Is there enough media and internet coverage of ALS? You can decide for yourself! In mean time I’ll accept that life is not always fair, care about others around me and try to spread hope that there will be a day others won’t have to suffer like so many of us do.
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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!
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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!
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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
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Just posted an article on Requip, see topic on Requip has already been discussed, Hopefully won’t be posted twice! All the Best
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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 available for an interview in Kentucky. Recieved 115,000 views and 300 kind messages on a photo sharing site, had and still have a link to the ALS Association for donations on that website (I know the ALSA has done lots for pALS) and it’s very much appreciated! Anyway, have been trying to get the word out there! Any help is important! I know so many people have tireously worked so hard supporting ALS causeses and spreading the word about awarness, most of these brave souls are gone now! It’s now time to pick up the torch!
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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 on average a year. It further complicates things when pALS can’t walk, use their arms or communicatie easily. pALS absolutely need help, need support with spreading the word about ALS awareness. We are asking! Time is Not on our side! Who’s responsible? Everyone! This includes businesses making massive amounts of money from this disease, making money from pALS, Yes this includes pharmaceutical companies, research organizations, non-profit associations and pALS a like are all responsible for getting the ALS story out there!
Richard and I have already written to so many people including the ALSA, we are keeping an extensive list of who we’ve contacted. We’ve already posted a partial list here on the forum. Let’s not shift the accountability solely onto pALS. Everybody needs to stay active. Actions speak louder than words! Dagmar Thank you for all your support and hard work over the years! There is so much more to be accomplished!
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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!
- “Advocacy – BioNews” https://bionews.com/advocacy/
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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 doing and contact CNN/CBS/Opera talk shows etc.. Try too get them to interview and run a story on her or a similar young person with ALS. Grab peoples attention! Can’t find a celebrity, make one. Just a thought. Jim
“Donate Now | Hopemobile for Kennedy Arney by Hark-ALS” https://secure.givelively.org/donate/hark-als/hopemobile-for-kennedy-arney
“”ALS Has No Victory Over Me” – A Chat with Kennedy Arney – I’m Dying to Tell You Podcast” https://imdyingtotellyoupodcast.com/episode/als-has-no-victory-over-me-a-chat-with-kennedy-arney/
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I’m switching any donations on emails etc.. away from the ALS association until we see more tangible results from them!
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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 involved is important, even sending a few emails is important too! I recently, posted (about als awarness) on a photo sharing website and got 115,000 views, good start! And Richard, my Gosh.. He is tirelessly contacting everyone! He just finished a philanthropic form for donations for ALS with The Ford foundation. So, there are so many positive things everyone can do to heighten awarness about ALS. Wishing everyone all the Best and stay Strong!
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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 comfortable with! Do it your way! Don’t watch others do the work. This disease has been extremely Difficult on pALS and our families, let’s not be easy on it! A journey of a thousand miles, starts with that first step.Take that first step and make a difference! All the Best!
I’m mentioning the below association in many e-mails, but you can mention any ALS charitable association you like! https://ALS.org
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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 donation link on your favorite social app with short comments.
#2 Copy/paste an appropriate google image flyer about May ALS awareness on social apps with a comment.
#3 E-mail/contact your local/city government representatives asking them to declare May an official ALS awareness month.
#4 E-mail your local news and radio stations regarding ALS awareness month.
The above are only suggestions, you can choose to do only one initiative or all. This may not be a national viral event, with Covid taking much of the attention right now, But any effort is better than nothing! Richard has already e-mailed a few agencies, I’ve e-mailed one so far. By tomorrow I’ll have posted before/after ALS diagnosis photos of myself and a ‘DutchBros donation link on a photo sharing website called ‘imgur. Within a week I’ll hit most social media sites with links about ALS awareness month! You can absolutely do the same on Facebook, Twitter, Instagram, TikTok, You-Tube or any website of your choice. Below are a few donation links you can use when posting! Wishing you strength and all the Best! Jim
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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 potentially life saving drugs at drastically inflated prices! What about people donating to ‘The ALS Association’ (link below)? Looks to be the exact same Association which should contacting the Big news stations about ALS awareness month. Donations can be made directly to local city ALS branches through the website? With my emails, could also add a ‘The ALS Association’ link. What do others here think about it? Let’s spread the word to non pALS. All the Best, Jim
“The ALS Association: Dedicated to Finding a Cure for ALS | The ALS Association” https://www.als.org