Neuropathy Awareness - Foundations, Research etc

@megidigo You are not alone. I think the problem from what I can tell is that the research is being done in the background and unless you are involved or actively looking for the latest research you won't see it or hear about it. It's really what brought me to Connect in 2016 looking for answers for my idiopathy small fiber peripheral neuropathy. I guess I should consider myself lucky that I don't have the debilitating pain and only have numbness, some tingling and the stinking balance issues that go along with neuropathy. You definitely have to be your own advocate by learning as much as you can about the condition and what treatments are available that may help. No one treatment works for everyone so that's why it's not an easy task. Here's some notes I took at one of the last Minnesota Neuropathy Association meetings I attended before they disbanded. We had some guest speakers on the latest research back then and I liked that they provided some interesting topics on the latest treatment at the time. There are links to the different research if you are interested.

@johnbishop
Thanks. I will take a look at the pdf.

The problem I brought up I would like to find a solution to. Even if you look at facebook groups its just the same questions about the same products over and over again and there is no involvement from admins or moderators which makes me think there is lots of bots in the group and also the actual intention of the facebook group. I wander if it is for the intention of monetization I could very well be wrong but that is the impression I get. Anyways something that I keep thinking of. If only I had some status to start something. I notice there is more activity in CIDP groups as well ie- fundraising, awareness, people involved.

@megidigo - I haven’t noticed any fund raising in the CIDP discussions. Fundraising is against the guidelines for Connect. Organizations like the Foundation for Peripheral Neuropathy do have a lot of research and fundraising but it is for real research projects.

Sorry I meant outside of Connect. its the Klim Foundation from Australia:
https://klimfoundation.org.au/

Hello @medidigo,
I can definitely understand your frustration and you’re not alone in how you feel. However, we live in a world overdosed on money. Even the pharmaceutical companies are in it for profit. Most of the research is done in medications that make those companies more money. They put in money to make money. In case you don’t know, there is more research done in diabetic neuropathy than any other type of neuropathy. The reason is all the medications on the market to control diabetes and therefore lessen the cause for neuropathy.
So yes, making money is the main catalyst for any type of research that any pharmaceutical company undertakes. They will not invest into anything that will not make them money. Do you still remember COVID that came out of nowhere? The pharmaceutical companies made staggering profits.
Sadly enough, that’s the world we live in.
I wish you the best always. Take care and have a serene weekend,
gus

OK, I will throw my two cents into this. Research and money more being spent on the killers in our society and that being heart disease, strokes, cancers, respiratory issues, ALS and a who knows how many other diseases taking the lives of many of us each day. Pick your enemy and those impacted by any of the previous mentioned will want money/research put into that area to save lives. I wish more could be done about finding most common causes of PN. I my opinion, find the cause will eventually take us to some sort of cure. Fingers crossed!