[Glen North]

same time.

[Glen North]

Hi Ahmed,

I tried both Radicava and Tudca.  I continued to progress. I didn’t notice anything.

glen

 

[Glen North]

Dagmar,

I guess I’m still doing okay despite having ALS.  Just a little frustrated with the length of time it takes new therapies to come to market.  Brainstorm’s Nurown for example has been in clinical trials for  more than 10 years!!  Besides that,  just doing all I can to slow progression.

[Glen North]

Dagmar ,

 

I completley agree with you . I thought I’d give it a try after speaking with several PALS ho said it helped.  I’m glad I tried and can now pass my experience on.

[Glen North]

i received my GAC injections  last week , but did not notice anything.  I was told that my strength would increase, however it did  not .

[Glen North]

Dagmar,

 

GAC refers to glutamine/arginine/carnitine injections directly into the muscle.  it is supposed to give you the ability to regain some strength .

[Glen North]

Hello Ahmed,

 

I have not received a lot of feedback yet.  I did speak to one lady who went to WMC, she had positive things to say.  I have ruled out corstem at this time due lack of efficacy and not able to speak directly with someone thats been there.

[Glen North]

I was on Radicava for 6 months, I am very in tune with my body and decided to go off it because I wasn’t benefiting at all!  It was somewhat time consuming, but a small price to pay if it actually worked.  as mentioned previously I don’t think the FDA should have let it go to market with the limited testing that was done.

[Glen North]

Ahmed,

Yes, i’m going to WMC, just waiting for the Corona epidemic to pass.

[Glen North]

Hello Ahmed,

I didn’t actually go to Korea due to the fact they closed their plant for an FDA inspection.  I then opted for my second choice which was Sential in Mexico.  I received 360 million stem cells  via the carotid artery, unfortunately I haven’t noticed anything.   I am now planning a trip to China where i’ll receive neuronal  stem cells along with other treatment  over 14 days.  I’ll  keep you posted.  All the best to your brother.

 

 

 

[Glen North]

Dagmar,

These stem cells are extracted from the spinal cord no our fat.  In layman’s term the stem cells have the ability to have an anti-inflammatory effect an neuro-protective qualities.  Here is a link to Coretem’s site.

http://corestem.com/en/m21.php

It”s certainly not a cure, but may be a way to extend your time.

btw, i certainly wouldn’t consider any other type of stem cell treatment….other than  NurOwn, but that is still in Phase 3 trials.

Brett – I’ll definitely keep you posted.  I”m planning to go in October.

[Glen North]

Hi Dagmar,

They aren’t making any promises, the best hope is that it slows progression somewhat.  It is not a cure.  It is approved by the Korean FDA, and they are undergoing approval in Europe.

I will have to return twice after my initial visit.  They have just got approval to freeze the stem cells, so they will only have to extract once.

[Glen North]

Jean-Pierre,

I’m in agreement with everything you said, but must clarify the time it takes a new drug to get to market.  When we’re talking about a drug with marginal but real efficacy,  I believe you are correct in the 10 year range.  Although, for a drug that is discovered to have a profound effect on something like ALS, the clinical trial process would go to probably phase 2, then it would very quickly gain market authorization (my bet would be just over a year).  In order for this to happen the drug would have to of had profound results in a very large percentage of the trial group.

I’m not sure of the probability of that happening any time soon, although the sheer number of players in this space today, the likelihood of it happening is instrumentally greater than even 4 ears ago.  Also I’m sure as with most medical breakthroughs, it will be stumbled upon by accident.  We can always hope that someone quickly stumbles:)

Glen

[Glen North]

Hi Amanda,

My diagnosis came right after I had an accident with a drill.  I tore the palm of my right hand quite badly.  It was sewn back up, but I got a bad infection, that I had to be treated with a strong IV antibiotic as well as an oral antibiotic.  My hand healed but I never got my strength back, it steadily weakened, then the ALS diagnosis.  Maybe too much of a coincidence!

The other trigger I’ve read, is and injury or trauma to a part of the body may trigger it, and it spreads from there.  I had both injury and trauma as well as antibiotics, the perfect storm!

Glen

[Glen North]

I was on Radicava (edaravone) for 5 months, I know my body extremely well and I’m certain it did absolutely nothing for me.  I stopped taking it even though it was supplied free of charge.

I din’t think Radicava should have been permitted to be marketed as an ALS treatment due to the sketchy trial, but this will continue to take place as long as we try to rush treatments for ALS to market.  Until robust biomarkers can be established there is no real way to determine if such products work to marginally slow progression.

With ALS presenting itself so differently in individuals, I believe that in a case such as Radicava, the trial results should have been duplicated 3 consecutive times in order to attain market authorization.  MT Pharma didn’t do that because they didn’t have to and perhaps worried on what the outcome would be.

To the people that say they notice a difference, I say terrific, but the placebo effect cannot be understated, and it indeed may help, although a placebo doesn’t cost an exorbitant amount.

[Glen North]

I was using drill when I had a bad accident, tearing the palm of my right hand, that happened four years ago (2015).  Since the accident I continued to lose strength in my right arm.  I went to my GP and complained about the loss of strength, he said it was due to the accident and to give it time.  I gave it more than a year and went back to my doctor and told him I am getting weaker, again he said not to worry.  Finally, almost 3 years after the accident and still losing strength I demanded to see a neurologist.  After just looking at my symptoms for less than an hour she said it looks like a MND (Jan, 2018).  I went to see another neurologist the following week and she did an EMG, and muscle conduction tests and confirmed ALS.  I have since seen two other neurologist who have both confirmed the ALS diagnosis.

I’m sure I would have been diagnosed much earlier if I hadn’t had the accident to complicate the matter.  There is also some thinking that the accident may have triggered the ALS, since it began at the same time.

[Glen North]

Yes, i was on Radicava from September 2018 until February 2019.  I quit taking it because it wasn’t doing anything.  Reports from from the other 200 patients on it in Canada show nothing positive either.  Unfortunately I believe it is an overhyped product that MT Pharma wants o make money on.  There is growing controversy in that it may do more harm than good.

[Glen North]

Thank you for the link Amanda, but it looks as though the link is in regards to submissions for clinical trial grants, nothing to do with the Lauren Sciences trial, unless i missed something.  I wanted to know how to get involved with the Lauren Sciences trial.

[Glen North]

Do you have any information on when and how they will recruit for Phase 1 trials?

[Glen North]

Work is my passion, I’m lucky in that regard.  I’m President of PNP Pharmaceuticals and going into work everyday keeps my mind active and off of the challenges that are in front of me.  Without work, I fear I would have too much time to think about my disease.  For me anyway, work is a time where I feel needed and not ill, it’s a time out from ALS, albeit only for 8hrs a day.