NeuroTalk Support Groups - The Neuropathy Journal

--and his cohorts do a good job of aggregating a lot of neuropathy information in one place.

Still (my pet peeve, as many of you know) the various organizations and foundations concerned with this condition have yet to unite and coordinate in such a way as to bring an overwhelming lobbying presence to government and industry, both on the national and local levels, to get more attention and research for the millions of neuropathy sufferers.

It is estimated that one in every twenty people will suffer from some form of neuropathy in a lifetime. In the US, that comes out to some 16 million people--far more than those who suffer with MS, Parkinson's and Myesthenia Gravis combined. However, the organizations for these conditions are far more influential in bringing attention and research dollars to their sufferers, and seem to have a much better history of working together and not getting involved in little turf wars.

True, neuropathy is often (but not always, especially for people with motor symptoms) a "no see'um" condition, and many people think of it as something one gets secondary to another condition that has decent advocacy--diabetes, chemotherapy, etc.--and so tend to shrug when people assert the need to treat it as a condition in its own right. But given the huge number of idiopathic sufferers, as well as the sheer debilitation the condition causes, it's well past time for the different neuropathy organizations to summit and come up with a plan to get more attention for the condition.

I have personally tried to be a liaison, especially in the aftermath of the December 2010 Neuropathy Summit in Washington DC, at which I spoke and many of the people involved in these organizations were under the same roof for the first time. But the energy from that gathering petered out very quickly, and the demise of the Neuropathy Association a few years back certainly didn't help the cause. I am left wondering just what it would take to get governments, doctors, researchers, media, etc. to pay more attention. Do we need a famous, charismatic sufferer, in the manner of a Michael J. Fox or a Montel Williams or an Annette Funicello? I am sure there are famous people suffering from neuropathy; how can they be encouraged to step forward?