Lack of Research , Big Problem
 

I wanted to post this link I came across , as I think it makes some very valid points about the problems involved with research & fundraising for anything that does not fall under the mantle of death such as cancer - or like mental illness or Parkinsons affects our thinking .

This is nothing new, but these articles do show how that perception results in unfair discrimination that ensures rare problems stay rare and treated as less important in spite of the great difficulties we face as result ( ignorance , skepticism )by those in the medical profession and elsewhere.

In effect, what this means is we're never going to get anywhere with , our problems unless we make these " invisible diseases " more visible under one umbrella and under once cause. ( see point 4 )

The cancer juggernaut together with big pharma ( which still hasnt cured cancer after 38 yrs ) and probably has no intention too , is just too powerful for any single entity such as neuropathy to challenge alone.

Although ,I don't think something like public perception can be easily changed in regards to our suffering , compared to death ( esp in the west ) I do think we could do a lot more , if we were more united about this discrimination ( and it is discrimination ), rather than simply waiting under the table for any scraps, like the proverbial dog.

Be interested to hear what other thinks.

melon

Not a bad article--
 

--and the steps taken to help to alleviate the problem are well-analyzed; I especially like the second, which is to point out how research into rare diseases has far wider implications and often leads to advances in other, unexpected areas. (This has always been one of the rationales for continuing the space program, for instance--it's arguable that without the advances there, we would not have the Internet or many portable electronics now.) And, of course, the effects of Viagra were discovered through research into helping coronary circulation. There are many other such stories.

The sad part is, neuropathy can hardly be considered a rare disorder, just a relatively unknown one, insofar as public (and researcher) perception is concerned. It is estimated that as many as one in 20 people in the US will have neuropathy at some point in life. That's far many more people than ever suffer with Multiple Sclerosis, Parkinson's, and Myesthenia Gravis combined, and yet all three of those conditions have far more money and attention devoted to them.

In terms of public perception, I often use the "survey" test. I pick up a little extra cash from time to time doing surveys, among which are those about chronic health conditions. In these, neuropathy is almost never mentioned, while the other three, and many others (i.e. peripheral artery disease, hypertension, spinal stenosis, epilepsy, etc.) are almost always asked about in the initial screening. And, amusingly, even here at Neurotalk, every time I type "neuropathy" it comes up underlined in red, meaning even the program here for the forum doesn't recognize it as a commonly used word.

These are not new observations; I've certainly ranted about it on these boards (and in many other places) multiple times in the past. I think there are multiple problems here, many of which I've discussed previously--the tendency of many to see neuropathy, if they know about it at all, as secondary to some other condition, such as diabetes; the lack of focus and frequent in-fighting among the neuropathy advocacy organizations (I often contrast this with the MS groups, who are VERY focused, cooperative, and have gotten a lot of movement in bringing new drugs to trial and attention to the condition), the lack of a galvanizing, articulate celebrity sufferer of neuropathy to speak up and advocate--not that there aren't celebrity sufferers, but we haven't had a Michael J. Fox or Annette Funicello step forward (we seem to have our sufferers advocate for something else, like Mary Tyler Moore for diabetes, or be very quiet, as Andy Griffith and Booby Short have been, and even when people such as Mother Dolores Hart speak up, the coverage often conveniently ignores the neuropathy part). I've joked that if I'm the highest profile person regularly writing about neuropathy for public consumption, now wonder the disease has a perception problem.

There are models to follow--the success of celiac disease getting coverage over the last fifteen years provides a path to follow, for example. But I think we need some big individual--a major politician or person in the performing arts--to come clean about having this to provide a tipping point.

What about using another model then, such as crowdsource funding and taking a different approach ?

If you look at the following thread here , and scroll down you will see there are few of these, with perhaps microryza and raregenomics being two of the most promising.

m

It seems that a condition needs to seem 'sad' for the general public to show any interest. Like those commercials on TV that show the injured, abused puppies, who couldn't feel sad for them, or the commercials with the children dying of starvation, who wouldn't want to donate money.

This is a big issue in autism funding, were there are all kinds of celebrities and big organizations like Autism Speaks, generating a massive amount of money for autism research. Who wouldnt feel for the hellish world that a child with autism lives in, just a little more money might release this child from the nightmare.
The problem is, that 99% of autism funding goes towards finding a cure and help for children.
Almost non of it goes towards helping adults with autism, who are thought of negatively, if thought of at all by the general population.
A child with autism makes people sympathetic, while a adult with autism makes people uncomfortable

I have never been comfortable with the autism fundraising either, not just because of the lack of adult support, but also because a lot of it goes toward organizational costs, salaries, and more fundraising. Also, although they are always claiming to be making progress, where are the adult success stories?
The way in which services are cut off for adults with severe learning issues, autism, etc. is ridiculous. I have Asperger's Syndome, and my three biological children all have some autism-spectrum traits. My eldest son has severe Asperger's. He teaches English in China, he is unemployable here despite having excellent foreign language skills (Russian major) because of his poor social skills.
My youngest child has a severe expressive and receptive speech disorder and a low IQ, but because he tests above his level, he would not qualify for special education. What happens to adults who have trouble functioning in society, especially in today's job market?

I think you miss the point though .

If it was crowd sourced then sufferers could contribute directly and have a sense sense of intimacy through a more " DIY " approach rather than not being given a choice.

The money contributed would be shown as it accumulated , and we would have input as it happened so there options for us as community to explore
instead of it all being decided by businessmen ,politics and other agendas.

Does it matter how the general public respond - yes , but if every pn sufferer was contributing even $1 a month towards something they felt connected too , I bet they'd be willing to give more , and I bet we could raise enough to get a lot more done provided we had a good enough research team - and got results.

m



as " A POTENTIAL CURE !! "

r
Exactly, where indeed ?

This is what puts me off donating, I want to see a clear objective, a long term serious approach with a good team implemented that has proven track record, not some 3-4 yr study with inexperienced researchers who are just showing up to collect a pay cheque from a drug company.

m

Actually the bit about the drug companies being involved is one of the taints on autism research. They heavily fund the research to ensure that no link is ever hinted at between the autism "epidemic" and vaccinations. A highly qualified biochemist once told me some very disillusioning information on this subject.

I think you might like this speech given by a fellow scot ( a dying breed Im afraid to say )

It nicely illustrates our problem todayIMO

m.

The more contrasting elements the better in general I feel - no question , thats why cancer ( being terminal ) is always touted as the posterboy for all illness .

Its glorified and vilified at the same time , so even the common airhead celeb its sucked into its proverbial web of intrigue and victims are made celebrities themselves .

*edit*

m