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Old 10-20-2022, 04:37 PM #9
glenntaj glenntaj is offline
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Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
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glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default The meeting did take place--

--it was short and involved more than a little feeling out; Mr. Kim, obviously, has not run across me before (though my history of activism in the area is pretty easy to find out, even if you never come to Neurotalk), and I had never spoken to him.

There wasn't a lot of revelation about the current state of the drug beyond that of the most recent Facebook webinar; Mr. Kim says he needs to watch his language when making any claims due to legal considerations (and I suspect, though this was not said, there are also venture capital considerations--the company and its backers are definitely going to want to monetize any useful drug to any extent feasible, especially in the US, where there are fewer pricing constraints than there would be in Canada or Europe). We do have some common ground across the ideas of the necessity to gain much more attention for the condition of neuropathy, and I explained that part of the disjointed response any such drug is likely to get is not only due to past disappointments, but because the neuropathy community, compared to, say, the MS or Parkinson's communities, is rather disjointed by type/presentation of neuropathy, and the sad fact that the various neuropathy groups have often kept to their silos and not played well with each other. (Those of you who've been at Neurotalk a while know I have written about this issue numerous times over the years, both here and elsewhere.)

What I was able to promise is to be a connecting agent; I have made sure Mr. Kim now has contacts with the Foundation for Peripheral Neuropathy (which has just hired a new Director of Development), the Western Neuropathy Association (I'm on the Board of Directors there), the Neuropathy Action Foundation, the Calgary Neuropathy Association, the Peripheral Neuropathy Support Network, and Neuropathy Commons (affiliated with Massachusetts General). I'm hoping when it comes time to get the word out about further clinical trials and/or response reporting this will make it easier for WinSanTor to recruit, and it will also keep things honest with lots of eyes looking on. And hopefully, if we get experience all working together here it will carry over to much more coordinated advocacy and education efforts in general.
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DavidHC (08-20-2023), echoes long ago (10-20-2022), jurgen975 (10-21-2022)
 

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