Discussion with Stanley Kim-CEO of Winsantor drug process update
 

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Its insane i am helping people with sharing this video of the only company that is doing something even if the outcome is still not certain but i am not getting any love except for one person here and that is Lara.
We are all suffering from this sickness we should be glad that there is something on the horizon

A lot of this may have to do with the fact--
 

--that similar initiatives in the past have not panned out--and WinSanTor has not exactly reached out to the neuropathy community; they seem to be more entrepreneurially based.

Nevertheless, I sent this quickie email to them.

As a long time neuropathy health activist and Board Member/Secretary of the Western Neuropathy Association, I try to keep up on developments in the field, so of course I have been watching WinSanTor with interest.

I would love to talk with your and exchange notes at some point; insamuch as there is yet no direct rehabilitative treatment for neuropathy, obviously a lot of us are hoping that your clinical trials pan out. Moreover, I don't know if you've noticed it or not, but what you are involved in has not gotten much publicity in the neuropathy community (I realize it may be early); still, it might behoove you all to reach out and have more contacts in that community.

--Glenn Ribotsky
Secretary
Western Neuropathy Association

Hi jurgen975,
Thank you for posting this. I have a feeling that many people, like me, are reluctant to spend time on another presentation promoting a drug because there are so many drugs out there on the market. There are shortcuts that can be taken if someone is interested in finding out if a drug is worth considering but unfortunately presentations by drug company CEOs aren't the best way to find accurate information about a drug. Too often the data presented by the drug companies tends to be skewed--in favor of the drug. So some people here are probably skeptical.

I'm actually quite happy receiving their newsletters and blogs showing what's going on with their trials etc.. I signed up ages back. There are a few other threads here regarding WinSanTor's research on the neuropathy drug/topical going back to 2019. There are some posts from a few new members and also others who have been here a while in the past but they never updated. I actually thought they were being quite proactive but that's perhaps because I receive all their info.. :confused:

I don't feel my life is in any way compromised by receiving and reading their information. If it was Novatis (sp?), Merck or Moderna or Pfizer I might, but not with what Winsantor are sending me.

It certainly doesn't feel like snake oil to me but I am not a scientist of course. If I lived in North America, I'd probably sign up for a trial if it ever eventuated for my situation. Snake oil to me felt like AstraZeneca/Targacept's TC-5214 recycled Mecamylamine/Inversine (very old drug that was a nicotine agonist and used for treatment of hypertension) that was aimed towards another health issue until it failed the trial totally. If WinSanTor can recycle an older drug and change it a little and get positive results then that would be astounding. (IF)

I just like to keep up to date with what they're doing and in the beginning their information seemed directed towards DPN, diabetic, and now they're doing trial for chemotherapy induced PN. It seems targeted to Breast Cancer treatments. Mine is not chemo related but is still a cancer treatment so I'm hopeful for more in the future. Different drugs, but similar or same outcome but they'd have to target one particular population for a trial.

I said this on another thread somewhere, but there are so many different causes of PN and we're all so different. It's hard to imagine one drug working for everyone if it does turn out to help at all. We are a while off I suppose but meanwhile I get their emails and news quite often even if it's not directed at my situation exactly.

Gosh, I don't want to be in this pain. I don't want anyone to be in this pain.

I now have
 

--a Zoom call scheduled with WinSanTor CEO Stanley Kim for this Thursday afternoon; I'll see what he says and report back.

During that webinar, he does make a big push for increased advocacy as regards neuropathy, and getting people to even recognize it as an entity, which has been one of my major initiatives over nearly twenty years of activism at this point. We'll see what ideas we can cross pollinate, and how serious the company might be beyond getting the drug approved.

That's a very good thing to do. Thank you.

Do you guys know any medical influencers or influencers that talk allot about related subjects

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.

worth a read!
 

it appears WST-057 is regenerating peripheral nerves.
Nothing much in the news :confused:

This one relates to diabetic neuropathy from what I can understand.

Peripheral Neuropathy Drugs in the Pipeline | Winsantor