Research Progress

[All is lost]

Please don't get the bashing stick after me. I guess I just need to vent. So how much progress have we made since the first case of ALS was diagnosed? Let's see Lou died in 1941. He lasted 2 years post onset. Wow what progress we have made. Seems all the other illnesses have made advancements for treatment and in some cases cure's. What about us.......None.

The USA gives so much money to other Nations (no offense to the folks from other Countries) but very little for ALS research. Oh, and that Ice Bucket Challenge that we use to here so much about, what a joke that was. It was just a FAD. You use to hear about it all the time, now not so much. I never understood it. No one I knew who did it gave money for ALS research or to help someone who has ALS. It was all show. Just smoke and mirrors.

I am not a wealthy man. Nor do I try and buck the system. I am just fed up with the games. My proposal is for us to march on Washington DC and demand and draw attention to our cause. Heck everyone else does it and they seem to get results. Why not us? At the very least we could all meet and share information. If you are interested please let me know.
Thanks for listening to my rant.

 

[Bob R]

I don't want to get political,but I will state this as fact. On Hillary Clinton's website, she proposes spending $ 2 billion per year on Alzheimer's disease and related disorders. A L S is related to Alzheimers.

https://www.hillaryclinton.com/issues/alzheimers-disease/

 

[Nikki J]

Who are you? Why do you care? ( interest other?) and were you in DC Thursday? If you were not at that event, maybe work with others already trying to address these issues.

 

[GregK]

March on Washington DC? How about "roll"?

As Nkki asked, who are you? And with an interest of "other", why do you care?

 

[All is lost]

Nikki and Gregg

I can assure you that I am not a Troll. To answer your questions:
1) My name is Eric. The ALS Specialist said there was a 70% chance that I had ALS. He was so sure he asked if I would participate in a research study that won"t benefit me but could help future ALS Patients.
2) The reason I care is because I don"t want my child to get it.
3) I was not in DC because I did not know about it. Also, I did not see it mentioned before the event or after the event in any news outlet.

Please don"t get mad at me because I want to take a more AGGRESSIVE approach to ALS AWARENESS. It is time for us to make a stand and demand funding.

Bob-I see your point about the connection of both Alzheimers and ALS. However, we need our focus in name on ALS.

 

[affected]

You can start talking about this if you actually receive a diagnosis. Until then, presuming you can hype our PALS and CALS up with your own agenda is out of line. Most of what you have said so far is off so far as being accurate information, and I'm not going to debate it with you as you are an undiagnosed person and should not be posting any thread except a single DIHALS thread of your own. The mods have left this post here, but I know they won't let it blow up into a big deal.

Go live what you have, there are no guarantees in life.

 

[All is lost]

You can start talking about this if you actually receive a diagnosis. Until then, presuming you can hype our PALS and CALS up with your own agenda is out of line. Most of what you have said so far is off so far as being accurate information, and I'm not going to debate it with you as you are an undiagnosed person and should not be posting any thread except a single DIHALS thread of your own. The mods have left this post here, but I know they won't let it blow up into a big deal.

Go live what you have, there are no guarantees in life.

_______________________________________________________________
I apologize if I offended anyone. Please know that was not my intent. I respectfully request that a Moderator delete my account.

I wish you all the best.

Eric

 

[chally]

Wtf? .?????????

 

[GregK]

Nikki and Gregg

I can assure you that I am not a Troll.

Hi Eric.

Thank you for clearing that up.
We do, indeed, get trolls. You seem to be just fine.

No need to go away, there's plenty of info for you here.
An aggressive approach is just fine, but in general we're not to fond of the scams out there (chelation, stem cell clinics, Lyme disease).

Please contribute.