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    • #17541
      Dagmar Munn
      Keymaster

      Thank you to one of our new forum members for bringing this to our attention.

      A laboratory study published in January 2021, from the University of Edinburgh, sheds light on how the damage to nerve cells caused by ALS/MND can be repaired by improving the energy levels in mitochondria – the power supply to the motor neurons.

      Researchers have discovered that, in human stem cell models of ALS/MND, the axon, the long part of the motor neuron cell that connects to the muscle, is shorter than in healthy cells. Also, the movement of the mitochondria, which travel up and down the axons, is impaired. The scientists showed that this was caused by a defective energy supply from the mitochondria and that by boosting the mitochondria, the axon reverted back to normal.

      Although the research focused on the people with the commonest genetic cause of ALS/MND, researchers are hopeful that the results will also apply to other forms of the disease. The results of the study are now being used to look for existing drugs that boost mitochondrial function and may be able to be repurposed to treat ALS/MND

      This link has several interesting time-lapse films showing mitochondria traveling along an axon in a motor neuron (nerve cell). https://www.euanmacdonaldcentre.org/about/news/mnd-study-provides-exciting-new-focus-for-potential-drug-treatments

      What do you think of this discovery? Do you have additional information on this topic to share with our members?

    • #17564
      Alesia Johnson
      Participant

      I really hope this is true!❤️❤️❤️

    • #17569
      David Crellin
      Participant

      Several friends sent me the link to this research, featured on the BBC website. I have already registered for the UK MND SMART clinical trials that will be used to test this discovery. I also emailed the leader of the trials in Edinburgh with details of my ALS diagnosis – c9orf72. And Edinburgh is a 2 1/2 hour drive, 1 1/2 hour train journey from home. MND SMART trials are extending to my regional MND centre at Newcastle-upon-Tyne, a short 30 mins drive away.

      So, ‘Hope springs eternal in the human breast’.

    • #17577
      Jim
      Participant

      Interesting! And Thank you ‘Dagmar for passing on that information/article! Lots of research and trials have been going on, how effective many are in slowing down symptoms is questionable; But very good to see progress is being made! We definitely need good news! It’s been known mitochondria (dysfuction) plays a role in ALS. Would be extremely interesting to know which recycled drugs they will use and if the drug slows or stops symptom progression! Let’s keep up with their progress! Kind of along the same lines as the article. I’m not a neurologist, but still wanted to add, I’ve been self medicating, plus mild exercise. Started the medications/supplements in October. About four out of the eight supplements are probably near the top of the list dealing with ‘Mitochondria dysfuction (Pterostilbene, Lipoic acid, NAD booster, Tudca and TumericCurcumin). So far, so good, but the next few months will tell more with my supplement experimentations. Stay strong and never loss hope! Let’s see if these studies show more promising results. We need some breakthroughs! Please keep me/us informed!

    • #17581
      Paul Tavano
      Participant

      🤞🙏🏻🙏🏻🤞

    • #17583
      Kerry Penn
      Participant

      My son sent this article to me just a few days ago. Praying and crossing my fingers that they find what they’re looking for and it will help all of us affected by ALS.

    • #17585
      Nina
      Participant

      It seems I have gotten many links over the years to studies that claim to be “breakthroughs.” We have no choice but to be hopeful. 😃

    • #17588
      David Crellin
      Participant

      Hi, just like James I’m doing my own trial (not exactly clinical!). I have C9orf72 fALS so read the research about Metformin and clinical trial in Florida, and a friend who’s a medical consultant sent me a supply anonymously (I guessed correctly). Now my village medical practice prescribes it – a free supply in the UK.

      Next I bought TUDCA, then curcumin, and now today Pterostilbene & Lipoic acid.

      And the good news: when I started Metformin last August my left arm, shoulder and hand were unaffected, and left leg stronger than right. Five months later … I can still walk upstairs and play guitar (not at the same time). And so far no bulbar symptoms.

      I keep a journal recording physical activity and weights used. So I have a note of my strength prior to first symptoms March 2019 and diagnosis March 2020. So far, so good.

      Waiting to hear from Edinburgh –  I’m registered with MND SMART here in the UK.

      My younger son, 28, is super fit, but found out before Christmas that he carries the gene mutation. So he’s planning to run 7,000 km in a year to raise funds. He runs about 50 miles a week already. He’s already considering taking Metformin as a prophylactic.

    • #17589
      DanD
      Participant

      🙏

    • #17612
      Steve Gillan
      Participant

      I too just saw the article. I have had my wife on a product for 2 months now. This product works directly on the mitochondria. After seeing the article was able to speak with a Dr. knowledgeable with the concept. I have not been getting the volume needed due to the feeding tube and problems my wife has with absorption. I was told other ways to get it in her. I will let you know how she does.

    • #17616
      Duane
      Participant

      Since it’s all in a experimental stage, only time will tell.  Berberine is probably more effective than Metformin.  Cancer research indicates slowing Mitochondria is beneficial in some instances.  Perhaps increasing the effects of Mitochondria will increase the risk of cancers?

    • #17618
      Martin Löbbing
      Participant

      TUDCA, mentioned by David 5 posts before, shall be tested in a study of the ALS-ambulance in the Charite, a hospital in Berlin. Perhaps I will try it also. Does someone know, where I can get it and which form and dosis will be the best?

    • #17622
      Duane
      Participant

      TUDCA is an OTC supplement that is widely available.

    • #17633
      Mary Tiknis
      Participant

      I have read that Acetyl-L-Carnitene a supplement involves mitochondrial function and energy production. Studies suggest that it may be beneficial for people with neurodegenerative diseases

      Mary Ann Tiknis

    • #17634
      Romy H
      Participant

      My twin sister who succumbed to ALS in June 2020, has an ex brother in law who is a Dr. He has forwarded information to her daughter that he feels they are very close to a cure. I will find out more but it has to do with this exact study. I realize Drs are privy to more info then we are so I will try to find out what I can to post here.

    • #17647
      David Crellin
      Participant

      Thanks for all the posts. Interesting dilemma: increased risk of cancer v. possible benefit to ALS.

      As someone who has survived one confirmed and one mysterious unproven cases of cancer, I’ll take the odds and address my current malady.

      I had a malignant melanoma excised from my right arm 8 yrs ago. After a further 3 yrs of observation, I found out it was regressive – my immune system had attacked the malignant cells and turned them into fatty cells.

      Forty years ago I developed a tumour in my thyroid gland (just by chance I was born a few miles north of the Windscale nuclear reactor fire in October 1957, Cumbria, England in the week it caught fire – radioactive iodine was released up the chimney in a southerly wind!). After numerous urgent tests 24 years later that finally suggested 95% probability of it being malignant, it was excised and found  to be benign.

      I remain rather amused that no clinician, medic or  researcher has ever shown any interest.

    • #17657
      David Shuey
      Participant

      FYI – Several excellent threads at the ALS-TDI Forums (https://www.als.net/forum/) discuss the link between mitochondrial health and ALS pathologies and suggest a number of potential therapeutic strategies.

      The most comprehensive is clearly the discussion started back in 2014 by an excellent contributor Barbarawanda titled – Quality control of mitochondria in neurons

      Other more recent threads include:

      Any opinion on this article “Breakthrough discovery reveals way of reversing Motor Neurone Disease damage”

      Melatonin is produced in the mitochondria and that may be for a good reason…….

      Mitochondria energy levels.

      ——–

      On a personal note, my wife is in her 12th year of Bulbar-onset ALS. For a number of reasons, we are very big believers in NAD+ elevation strategies – not only for promoting mitochondrial and metabolic health, but also its critical role as a sirtuin cofactor. For this, we also use pterostilbene as a sirtuin co-activator (think resveratrol). I suggest that melatonin supplementation should also be considered.

      Reviewed: “NAD+ in brain aging and neurodegenerative disorders” https://pubmed.ncbi.nlm.nih.gov/31577933/

      ———

      A pilot study of the NAD+ precursor Nicotinamide Riboside + pterostilbene conducted in Spain in 2017 was very promising:  (https://www.tandfonline.com/eprint/5j6sIsrMDYd37hjpNghx/full?target=10.1080%2F21678421.2018.1536152&)

      A Phase 2 equivalent trial is currently recruiting in Norway: ClinicalTrials.gov Identifier: NCT04562831

      ——–

      Cheers and Good Luck to all ~ Dave

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