Hi Rando,

You are an early patient. For acceptance into SPG302 EAP, you need to be able to swallow pills and your FVC score should be greater than 35%. I am sure you will be able to be started with this EAP soon. All the best. Please keep us posted here.

With all the luck,

NJ Guy

Thank you all for responding.

Actually this drug looked very promising since it was helping for the growth of dendrites and resulted into new synapses. But, looks like not many good results are being reported.

Can anyone comment on this if there is any early access to the outcome of this EAP?

Thanks,

NJ Guy

Hi all,

Thank you so much for your replies. Definitely will be cautious and am doing as much research as possible. Have you heard of Dr. Bradley Cubitt in Texas? He also is trained by Dr. Prodromos to administer this exosome treatment as well… Please let me know if you know anything about this doctor as well.

Thanks,

NJ Guy

Hi all,

I have come across Dr. Prodromos’ exosome intranasal treatment for ALS. Attached is his website: https://www.ismoc.net/ Dr. Prodromos has conducted a clinical trial (NCT07105371) and some ALS patients have claimed to have regained mobility in their limbs after a few treatments. The treatments are to be done every month and the…

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Yes, this EAP is running in the USA and there are 200 spots at this time but Spinogenix is trying to get approval for 500 more patients.

Also yes, there are enrollment criteria (1 – FVC score which has to be more then 35%, 2 – should be able to swallow pills). If you are in the USA, you can request your neurologist to be in touch with…

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Hi all,

The FDA approved SPG302 Expanded Access Program (EAP) some time in May 2025. It looks like Spinogenix has started enrolling ALS patients for this EAP. Are there any patients part of this forum that are now participating in this EAP? I would like to know about any early feedback from patients who are already enrolled and started taking…

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Hi all, hope you are doing well!

I have seen some replies here mentioning good results from using the CNM-AU8 drug (gold nanoparticles). Some even mentioned gaining better strength. I would like to hear more from the pALS, seems like the CNM-AU8 drug is pretty promising.

Thanks & best regards!

Hi Leonard,

Glad to know your wife responded well to the CNM-AU8. I would also like to get this medicine and I am 36 months+ after diagnosis. You mentioned this is available from NOVA in Davie, FL. Is there any email or phone number you can share which can help me obtain this medicine?

I believe CNM-AU8 is a gold nanoparticle suspension, there…

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Hi Louis

Sorry for that question, I just looked up the trial info, and it does say 15g x 2 daily dose of L-serine

Related questions: How long have you been taking? and do you see any improvements?

Thank you so much!

Hi Louis

Thanks you for your post about L-serine.

I would like to start with that. Question – are you sure about the max dose of 15000mg? or is it 1500mg? Does that come in a tablet form? or just powder?

Thanks

 

Hi All

Hope you are in great spirit!

I came across this news: a breakthrough discovery at Tel Aviv University :

https://english.tau.ac.il/news/reversing_als_2021#:~:text=New%20Tool%20for%20Combating%20the,nerve%20cells%20(motor%20neurons).

This addresses the problem of TDP-43 protein misfolding.

My question is: there is already… Read more

Hello friends:)

Hope you are all doing great!

I came across following article regarding how Sulforaphane works as neuroprotective phytochemical.

https://pubmed.ncbi.nlm.nih.gov/23983898/

I think any dietary source for sulfur can be really useful, vegetables that are good source for sulforaphane are : broccoli, cauliflower,… Read more

Yes I totally agree with Richard 🙁

And there seems to be no action plan or initiative, and the trials take their own pace.

AND pALS are suffering! And God only knows when there will be a real cure!

What is the way out????

Hi Jim

Actually there is a clinical trial (recruiting now) which I mentioned earlier. So my doctor says I should go for that. But I am thinking to buy on my own, and for my doctor to prescribe this drug, I need to wait a few weeks due to holidays. One of the Japan pharmacy may not need prescription –> https://bio-japan.net/ketas-ibudilast.… Read more

Hi

I think I would better order Ibudilast from Japan rather than to be on trial, since on trial there will be 50/50 chances to be either on drug or placebo.

@Andrew, Thank you so much for your inputs!

Wishing all the best to you all!

Hi Andrew,

Thank you so much for sharing the information about Ibudilast, this is exactly the same idea that I mentioned above. Here is a link which describes the trial related to this drug

MN-166 (Ibudilast)

This drug works to modulate/control the immune system for either genetic / sporadic pALS.  It plays important… Read more

Hi All

Hope you all feeling great today!

I have been reading a lot about causes / possible mechanisms / possible treatments for ALS.  Among other possible causes (inflammation / toxicity / genetic / gut microbiome / protein folding / mitochondrial etc ) one of the possible one is response of immune system to the antibodies, T cells,… Read more

Hi

Hope you are all feeling great!

I just watched this recent video published on 9/25 by EverythingALS which covers the clinical trial for Clenburterol by Dr Bedlack, he also talks about promising outcomes –

Anyone thinking of trying out Clenbuterol? This is normally available as muscle… Read more

Nicotinamide adenine dinucleotides, NAD and NADP (NAD+), are indispensable cofactors involved in several redox reactions in all forms of cellular life. NAD+ is <b>an electron carrier which will pick up electrons during the</b> course of cellular respiration. Very important for the cell functions.

Hi

Hope you all feeling better!

I came across this article – Coffee and NAD+  I was a coffee drinker when working in office before Covid pandemic started (sometime in Mar 2020), but then working from home that was discontinued.

I have now included at least two cups of coffee and NAD+ along with other supplements for about a couple… Read more

Hi Duane & Susan

sorry to reply to this so late!

I had always been to my primary just for annual check ups, and last couple of years my PCP saw the cholesterol on border line and he told me to be careful, and so I had stopped or reduced on fatty foods – 1% milk, avoiding cheese/pizza and fried food etc. And in almost 1 year of trying to lower… Read more

I started with Riluzole 50mg 2/day but after taking for about 4wks, it gave me lot of weakness and lost appetite, so I talk to my neurologist, he suggested to stop for sometime. After stopping I really felt much better. I am thinking of taking 1/day.

Glad to hear that!! Would you please keep us updated how you feel / improve on any symptoms?

Wishing you all the best!!

Janice,

Can you please share details of clinic where you received stem cell therapy? I and my family will be really so thankful to you!

best regards

 

Congratulations David Crellin!  And wish you the best!

I was also so scared of lumbar puncture when my neuro had suggested, but it was absolutely painless. Here is my experience: There was a nurse who prep me for the procedure, and they first examine the lumbar spinal region on x-ray and see what gap (e.g. L4/L5)  is best, then apply a local… Read more

Thanks Mark & Carol!

I have ordered Theracurmin, will soon receive that and will start. I am seeing actually good effects of just turmeric + pepper in warm water – three times a day. I am sure Theracurmin will be even better.

For any acid reflux / digestion issues, I am taking all natural Trifala churan (powder) – one tea spoon after… Read more

I also quit Riluzole after about 5 wks. I would actually make me feel tired, low on energy, more muscle weakness than before, feel dizzy, loss of appetite, indigestion, etc. About 1 wk now without Riluzole, and I feel good strength, also can do exercise better.

I am also taking supplements like vitamins B12, E, CoQ10, TUDCA, also natural… Read more

For diagnosis of ALS – neuros follow Gold Coast criteria which is considered most apt at this time –

The Gold Coast criteria for diagnosis of ALS require (1) progressive motor impairment documented by history or repeated clinical assessment, preceded by normal motor function; (2) presence of UMN and LMN signs in at least 1 body region (with… Read more

This is the clinical trial NCT03268603 – Mesenchymal stromal cells (MSCs) for ALS

There are three recruiting centers  Jacksonville, FL; Scottsdale, AZ, Rochester, Minnesota. All three centers will recruit patients as per the wait list, some initial visits needed to the center where recruited first and then actual stem cell treatment to… Read more

to moderator:

Not misinformation:) Trying to find the views from this forum which can help me and possibly others!

If you know how difficult is the time for us (me and my family and of course for all PALS) and how desperately we are looking for cure or anything that will bring even smallest improvement to the symptoms!

And we also look… Read more

Thank you so much for your reply, Jean!

I had found one more – Global Stem Cells in Thailand, they have many videos of the patients, not sure if those are real or actual patients.  Also have found reviews which are pretty conflicting.. so it is hard to be convinced..

Thanks again!

 

Special Note from the Forums Moderator:

… Read more

Hi

I was diagnosed with Progressive Muscle Atrophy (PMA) in Jan2021 which kind of falls under MND/ALS, with slow progression. And while looking for possible stem cell treatment online, I found this:

https://anova-irm.com/en/treatments-disease-stem-cells/neurodegenerative-diseases/amyotropic-lateral-sclerosis-als

Anova-IRM in… Read more

Can you please give details of clinic where you received the stem cell therapy?

Thank you!

Hi All – the chosen ones :))  particularly when being 1 in 100,000!!

Diagnosed with PMA in Jan2021, weakness in my legs started in summer 7/2020 with stiffness in calf muscles on both legs, could not walk more than a mile. Slow progression, first had bilateral foot drop, but used the AFO to walk with balance. But the weakness progressed and… Read more