Thank you LoriRenee. I am interested in the class. Peggy

REPLY
@margaret10

Hi Barry,

There has been a recent development: a neuropathy biomarker called sarm1 has been identified by a start-Up company called Disarm. Disarm was recently acquired by Lilly. Sarm1 is a naturally occurring protein that is activated when a nerve is damaged. Sarm1 induces inflammation which further damages the nerve and surrounding tissue. Lilly is developing inhibitors of sarm1 which could act to stop the inflammatory reaction and stop further damage to the nerve. I don't know if inhibitors have been identified yet. However, I think we are looking at 5-10 years before such inhibitor could make it to market.

One big selling point for this line of research is that such inhibitors could be useful in the treatment of other neurodegenerative disorders like Parkinson's. In short, there could be a big market for such inhibitors which obviously is a big motivating factor for pharmaceutical companies.

Margaret

Jump to this post

Hello Margaret, I am Sunnyflower. Wow this info is fantastic!! Thanks so much! I wonder if any neurologists know about this? Warmest wishes, Sunnyflower

REPLY
@catharbert

Please see the Foundation for Peripheral Neuropathy newsletter for information on Congressional action to fund research::
https://www.foundationforpn.org/2020/11/06/advocating-for-peripheral-neuropathy-research-funding/?blm_aid=1754340353
Update on the 2021 Appropriations Bill

On November 10, 2020, the Senate Committee on Appropriations released their version of the fiscal year 2021 Defense Appropriations Act. We are excited to report that this legislation includes “peripheral neuropathy” among the conditions eligible for research under the Peer-Reviewed Medical Research Program (PRMRP).

Jump to this post

Thank you so much! 😊

REPLY

Foundation for Peripheral Neuropathy Webinar
Living Well with Peripheral Neuropathy: Ask the Expert
— Wed, Dec 16, 2020 2:00 PM – 3:00 PM CST

FPN welcomes Dr. Shanna Patterson for a special session to answer YOUR questions on Living Well with Peripheral Neuropathy. Join us for some first hand answers to your questions from an expert on peripheral neuropathy.

Dr. Shanna Patterson, M.D., FPN’s Patient Education Advisor, is Assistant Professor of Neurology at Mount Sinai West in New York City.

Note: Questions should be general in nature. We are unable to answer questions related to a patient's specific care, treatment, or diagnosis.

Register for the Webinar – https://register.gotowebinar.com/register/7143578033665189643

REPLY
@sunnyflower

Hello Margaret, I am Sunnyflower. Wow this info is fantastic!! Thanks so much! I wonder if any neurologists know about this? Warmest wishes, Sunnyflower

Jump to this post

Hi Sunnyflower, I learned about sarm1's role in nerve death and neuropathy from a webinar put on by the Foundation for Peripheral Neuropathy. The webinar concerned neuropathy arising after chemotherapy. I've never had chemotherapy but have been on plenty of other drugs that can be toxic, so I thought I might learn something useful.

Because Eli Lilly has acquired the technology from startup company Disarm, there are now deeper pockets to identify sarm1 inhibitors. My guess is that it will take years to identify and run clinical trials with candidate inhibitors.

However, the M.D. speakers also mentioned something else that may be useful in the short Term. Sarm1 is an enzyme that, among other things, breaks down NAD+ in damaged neurons. NAD+ is a type of energy currency used by neurons to carry out normal functions. If the neuron is depleted of NAD+, it kills the neuron causing pain along the way.

The doctors mentioned that there is a new supplement available called Tru Niagen or nicotinamide riboside. In your neurons, it is converted to NAD+, thereby compensating for the loss of NAD+ caused by activated sarm1. I've just started taking it. I have no idea if it will work. It's supposed to take 4-8 weeks. I've tried many diets, supplements and treatments for my neuropathy, so what's one more?

Re neuroplasticity, I underwent neurofeedback training for 2 years for epilepsy. It absolutely worked to help me bring my seizures under control. Unfortunately, it did nothing for my pain. Neuroplasticity/neurofeedback is a very useful tool. Make sure you get it from a practitioner who is certified.

Best wishes.

Margaret

REPLY
@margaret10

Hi Sunnyflower, I learned about sarm1's role in nerve death and neuropathy from a webinar put on by the Foundation for Peripheral Neuropathy. The webinar concerned neuropathy arising after chemotherapy. I've never had chemotherapy but have been on plenty of other drugs that can be toxic, so I thought I might learn something useful.

Because Eli Lilly has acquired the technology from startup company Disarm, there are now deeper pockets to identify sarm1 inhibitors. My guess is that it will take years to identify and run clinical trials with candidate inhibitors.

However, the M.D. speakers also mentioned something else that may be useful in the short Term. Sarm1 is an enzyme that, among other things, breaks down NAD+ in damaged neurons. NAD+ is a type of energy currency used by neurons to carry out normal functions. If the neuron is depleted of NAD+, it kills the neuron causing pain along the way.

The doctors mentioned that there is a new supplement available called Tru Niagen or nicotinamide riboside. In your neurons, it is converted to NAD+, thereby compensating for the loss of NAD+ caused by activated sarm1. I've just started taking it. I have no idea if it will work. It's supposed to take 4-8 weeks. I've tried many diets, supplements and treatments for my neuropathy, so what's one more?

Re neuroplasticity, I underwent neurofeedback training for 2 years for epilepsy. It absolutely worked to help me bring my seizures under control. Unfortunately, it did nothing for my pain. Neuroplasticity/neurofeedback is a very useful tool. Make sure you get it from a practitioner who is certified.

Best wishes.

Margaret

Jump to this post

@margaret10
Hi Margaret, my wife and I have been taking Tru Niagen for about 6 or 7 years. She takes 300 mg every day, I take 450 mg, but only on certain occasions, mostly when I am going to do a lot of driving on a given day. We both take a number of supplements. With most of them it is not easy to notice their effect. With a few it is and Niagen is one of those. Whatever else it does for me, I notice a definite effect on me when I am driving. I am more alert, more focused, it is easier to focus for a long time, hours in fact. Driving, which is usually boring as heck actually becomes in some weird way interesting to me. Less than 450 mg and I don't seem to notice this as much. I take it with breakfast and notice its effect all day. It's important to take it with food.

I think for me it acts as a brain enhancer. The reason I do not take it every day is that on days when I am not driving I don't notice the overt effect as much. Right now the one day each week I always take it is when I am going to be driving for the Red Cross delivering blood to hospitals. I take it to be safe on those drives, to be alert on my drive.

It's not cheap, but I probably should still take it every day like my wife does. It's just that I view it more as a tool to use when needed. I think I worry that if I take it every day it won't work as well for me. I do not know this to be true, but I have formed a habit of this style of use. Now that I am writing this I am starting to think maybe I should start to take it every day for a while just to test my theory.

Anyway, since you mentioned it I thought I would give it an endorsement since I know it has had a positive effect for me. Hope you see benefits from it also.

Best, Hank

REPLY
@margaret10

Hi Sunnyflower, I learned about sarm1's role in nerve death and neuropathy from a webinar put on by the Foundation for Peripheral Neuropathy. The webinar concerned neuropathy arising after chemotherapy. I've never had chemotherapy but have been on plenty of other drugs that can be toxic, so I thought I might learn something useful.

Because Eli Lilly has acquired the technology from startup company Disarm, there are now deeper pockets to identify sarm1 inhibitors. My guess is that it will take years to identify and run clinical trials with candidate inhibitors.

However, the M.D. speakers also mentioned something else that may be useful in the short Term. Sarm1 is an enzyme that, among other things, breaks down NAD+ in damaged neurons. NAD+ is a type of energy currency used by neurons to carry out normal functions. If the neuron is depleted of NAD+, it kills the neuron causing pain along the way.

The doctors mentioned that there is a new supplement available called Tru Niagen or nicotinamide riboside. In your neurons, it is converted to NAD+, thereby compensating for the loss of NAD+ caused by activated sarm1. I've just started taking it. I have no idea if it will work. It's supposed to take 4-8 weeks. I've tried many diets, supplements and treatments for my neuropathy, so what's one more?

Re neuroplasticity, I underwent neurofeedback training for 2 years for epilepsy. It absolutely worked to help me bring my seizures under control. Unfortunately, it did nothing for my pain. Neuroplasticity/neurofeedback is a very useful tool. Make sure you get it from a practitioner who is certified.

Best wishes.

Margaret

Jump to this post

Margaret please keep us posted on the Tru Niagen and thank you for sharing!

REPLY
@jesfactsmon

@margaret10
Hi Margaret, my wife and I have been taking Tru Niagen for about 6 or 7 years. She takes 300 mg every day, I take 450 mg, but only on certain occasions, mostly when I am going to do a lot of driving on a given day. We both take a number of supplements. With most of them it is not easy to notice their effect. With a few it is and Niagen is one of those. Whatever else it does for me, I notice a definite effect on me when I am driving. I am more alert, more focused, it is easier to focus for a long time, hours in fact. Driving, which is usually boring as heck actually becomes in some weird way interesting to me. Less than 450 mg and I don't seem to notice this as much. I take it with breakfast and notice its effect all day. It's important to take it with food.

I think for me it acts as a brain enhancer. The reason I do not take it every day is that on days when I am not driving I don't notice the overt effect as much. Right now the one day each week I always take it is when I am going to be driving for the Red Cross delivering blood to hospitals. I take it to be safe on those drives, to be alert on my drive.

It's not cheap, but I probably should still take it every day like my wife does. It's just that I view it more as a tool to use when needed. I think I worry that if I take it every day it won't work as well for me. I do not know this to be true, but I have formed a habit of this style of use. Now that I am writing this I am starting to think maybe I should start to take it every day for a while just to test my theory.

Anyway, since you mentioned it I thought I would give it an endorsement since I know it has had a positive effect for me. Hope you see benefits from it also.

Best, Hank

Jump to this post

@jesfactsmon Hank, please try taking the lower dose everyday and let us know how it works. I'd like to have something that would keep me more focused. Have you ever considered taking your wife to Mayo Clinic for pain management?

REPLY
@margaret10

Hi Sunnyflower, I learned about sarm1's role in nerve death and neuropathy from a webinar put on by the Foundation for Peripheral Neuropathy. The webinar concerned neuropathy arising after chemotherapy. I've never had chemotherapy but have been on plenty of other drugs that can be toxic, so I thought I might learn something useful.

Because Eli Lilly has acquired the technology from startup company Disarm, there are now deeper pockets to identify sarm1 inhibitors. My guess is that it will take years to identify and run clinical trials with candidate inhibitors.

However, the M.D. speakers also mentioned something else that may be useful in the short Term. Sarm1 is an enzyme that, among other things, breaks down NAD+ in damaged neurons. NAD+ is a type of energy currency used by neurons to carry out normal functions. If the neuron is depleted of NAD+, it kills the neuron causing pain along the way.

The doctors mentioned that there is a new supplement available called Tru Niagen or nicotinamide riboside. In your neurons, it is converted to NAD+, thereby compensating for the loss of NAD+ caused by activated sarm1. I've just started taking it. I have no idea if it will work. It's supposed to take 4-8 weeks. I've tried many diets, supplements and treatments for my neuropathy, so what's one more?

Re neuroplasticity, I underwent neurofeedback training for 2 years for epilepsy. It absolutely worked to help me bring my seizures under control. Unfortunately, it did nothing for my pain. Neuroplasticity/neurofeedback is a very useful tool. Make sure you get it from a practitioner who is certified.

Best wishes.

Margaret

Jump to this post

Wow, such great info! A lot for my brain to take in LOL! Please keep me posted it sounds very interesting! Have you run this by your neurologist? I'm wondering what that response may have been.

Take Good Care, sunny

REPLY
@bustrbrwn22

Margaret please keep us posted on the Tru Niagen and thank you for sharing!

Jump to this post

Yes, definitely and thanks so much for sharing! Sunnyflower

REPLY
@sunnyflower

Yes, definitely and thanks so much for sharing! Sunnyflower

Jump to this post

I'll keep you posted on how it goes with Tru Niagen. However, it's going to take 4-8 weeks according to the manufacturer and I just started yesterday. Take care and stay safe.

REPLY
Please sign in or register to post a reply.