PN: Current research?

Posted by Ray Kemble @ray666, Jun 26, 2023

Hi!

Is anyone following recent research on PN? I've checked, and although I've found lists of clinical trials, most are over or have closed due to a lack of funding. Yesterday's NYT had an interesting article about the high hopes placed on Crispr research. A dozen maladies were mentioned as possible beneficiaries in the coming years (and decades), but not PN. Have any of you read any recent promising research stories?

Ray (@ray666)

Interested in more discussions like this? Go to the Neuropathy Support Group.

I'm still waiting for a stem cell therapy breakthrough. Lots of research info in my notes from an August 2018 meeting at the Minnesota Neuropathy Association (attached below). Also we have a lot of discussions on the topic that you may want to peruse:
--- Contributing to Neuropathy research - Stuff That Works: https://connect.mayoclinic.org/discussion/getting-involved-in-hopes-of-finding-help/
--- Idiopathic Small Fiber Neuropathy Research: https://connect.mayoclinic.org/discussion/mayo-clinic-and-idiopathic-small-fiber-neuropathy-research/
--- Has Anyone Enrolled in the Peripheral Neuropathy Research Registry: https://connect.mayoclinic.org/discussion/has-anyone-enrolled-in-the-peripheral-neuropathy-research-registry/
--- Scientific research and scholarly papers on Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/scientific-research-and-scholarly-papers-on-small-fiber-neuropathy/

Shared files

18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes.pdf)

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@johnbishop

I'm still waiting for a stem cell therapy breakthrough. Lots of research info in my notes from an August 2018 meeting at the Minnesota Neuropathy Association (attached below). Also we have a lot of discussions on the topic that you may want to peruse:
--- Contributing to Neuropathy research - Stuff That Works: https://connect.mayoclinic.org/discussion/getting-involved-in-hopes-of-finding-help/
--- Idiopathic Small Fiber Neuropathy Research: https://connect.mayoclinic.org/discussion/mayo-clinic-and-idiopathic-small-fiber-neuropathy-research/
--- Has Anyone Enrolled in the Peripheral Neuropathy Research Registry: https://connect.mayoclinic.org/discussion/has-anyone-enrolled-in-the-peripheral-neuropathy-research-registry/
--- Scientific research and scholarly papers on Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/scientific-research-and-scholarly-papers-on-small-fiber-neuropathy/

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This is fantastic, John! Thank you for these links. I'd already written to Rep. Diana DeGette, my U.S. representative, who'd done a lot of work some years ago promoting Parkinson's research, but for my letter to Rep. DeGette, I had nothing to go by. These links will be super helpful. I've not heard back yet from Rep. DeGette, but this afternoon I'll send letters to my senators, Bennett and Hickenlooper. I'm so glad you have these references at your fingertips. Again, thanks, John!

Ray

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John Hopkins has a PN research group which is requesting donations to fund its research.

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That's interesting. VERY interesting! I've been scouring the web looking for things like this. The trick now is how to put together a program capable of raising enough money for it to be of real help. That's a puzzler. As a guy retired from a lifetime of working in the arts, I could spare maybe twenty bucks. LOL How do we get people and/or corporations who do have the means excited about helping with PN research? There must be a way.

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@ray666

That's interesting. VERY interesting! I've been scouring the web looking for things like this. The trick now is how to put together a program capable of raising enough money for it to be of real help. That's a puzzler. As a guy retired from a lifetime of working in the arts, I could spare maybe twenty bucks. LOL How do we get people and/or corporations who do have the means excited about helping with PN research? There must be a way.

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Foundation for Peripheral Neuropathy funds a lot of research from donors.

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Thanks, John. The Foundation is terrific! I've been using them as a resource ever since you told me about them. How is your day going? My partner wants me to take her shopping. That's going to involve a lot of walking. I'm not looking forward to it, as you might imagine. 🙂 ––Ray

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@ray666

Thanks, John. The Foundation is terrific! I've been using them as a resource ever since you told me about them. How is your day going? My partner wants me to take her shopping. That's going to involve a lot of walking. I'm not looking forward to it, as you might imagine. 🙂 ––Ray

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Just finished a refreshing ice cream break at Clem’s Cones a small ice cream and more shop not too far from home. Now I’m going to figure out how long I have to ride the exercise bike to pay for it 😁

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@johnbishop

Just finished a refreshing ice cream break at Clem’s Cones a small ice cream and more shop not too far from home. Now I’m going to figure out how long I have to ride the exercise bike to pay for it 😁

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Good morning, John

I hope your exercise bike didn't insist you stay in the saddle for 20-30 miles! 

Since I created this topic about current research, I've been asked by a few why I'm suddenly interested in current research. I guess it's just sort of a natural segue for me. I'm the kind of guy who can get lost thinking only about his own predicament. When that happens, I find my spirit goes down and down and down. Finding something else to attach my thinking to has always helped me keep my spirits up. PN is so dominant in my life that it's hard to find something to involve myself in that's not related to PN. That's why I came up with the idea of learning something about PN research. (I have other things going on in my life besides PN, like my work, but I can't totally escape thoughts of PN––and why should I try to? Trying to "make" myself not think about my disease would be self-defeating, like trying to "make" myself not think about that toothache: my tooth would only hurt more. ) So, why my interest in current research? That's just me. I long ago learned that if I'm going to keep my spirits up––for my sake as well as for my partner's and my friends'––I need things to be thinking about other than me and what PN is doing to me.

I'm due to climb on board my exercise bike in a few minutes. Every time I climb on board that devil machine, I'm hoping the stirrups don't grab hold of my toes and keep me peddling for days. 

Have a great day, John!
Ray

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@ray666

Good morning, John

I hope your exercise bike didn't insist you stay in the saddle for 20-30 miles! 

Since I created this topic about current research, I've been asked by a few why I'm suddenly interested in current research. I guess it's just sort of a natural segue for me. I'm the kind of guy who can get lost thinking only about his own predicament. When that happens, I find my spirit goes down and down and down. Finding something else to attach my thinking to has always helped me keep my spirits up. PN is so dominant in my life that it's hard to find something to involve myself in that's not related to PN. That's why I came up with the idea of learning something about PN research. (I have other things going on in my life besides PN, like my work, but I can't totally escape thoughts of PN––and why should I try to? Trying to "make" myself not think about my disease would be self-defeating, like trying to "make" myself not think about that toothache: my tooth would only hurt more. ) So, why my interest in current research? That's just me. I long ago learned that if I'm going to keep my spirits up––for my sake as well as for my partner's and my friends'––I need things to be thinking about other than me and what PN is doing to me.

I'm due to climb on board my exercise bike in a few minutes. Every time I climb on board that devil machine, I'm hoping the stirrups don't grab hold of my toes and keep me peddling for days. 

Have a great day, John!
Ray

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Hi Ray! Enjoy your ride 🙂 I have my exercise bike (Teeter FreeStep) located where I can watch TV while I'm exercising. Love watching those BBC TV series. Latest one I finished was the Detectorists which was kind of interesting in an odd sort of way. Have to love the British humor.

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@johnbishop

Hi Ray! Enjoy your ride 🙂 I have my exercise bike (Teeter FreeStep) located where I can watch TV while I'm exercising. Love watching those BBC TV series. Latest one I finished was the Detectorists which was kind of interesting in an odd sort of way. Have to love the British humor.

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Quick reply before my work day starts. I just wanted to say that my partner and I also love those BBC mystery series. They've made us a little leary, however, of wandering the English countryside. All that crime scene tape! All those bodies! 🙂 ––Ray

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