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Thread: CuATSM ?

  1. #21
    Quote Originally Posted by Kayleigh View Post
    Many thanks Lee, for your very detailed and informative answer to my question about the approval of CuATSM for use in the UK, if it is approved in Australia. Also, many thanks to the MNDA for their very helpful blog.

    The information has helped me to focus my thoughts on the realities of the situation about the approval process. In future, I will be more mindful of the complex process that is involved before a drug can be approved. Also, I will no longer presume that just because a drug has been approved in another country, it will soon become available for us here on the NHS. However, you made a very interesting point Lee, about there being similarities between the Australian process and process of approval here - and, hopefully, this will bode well for us here if CuATSM is approved in Australia. There is, of course, the other hoop to be jumped through - even if approved, will it be deemed cost effective enough for it to be funded by the NHS? - but that's probably a separate issue.

    I have kind of given up on Edaravone being made available on the NHS. However, sometimes it does cross my mind - what if I lived in America, and the cost was covered by my health insurance company, would I go ahead with taking Edaravone? I would probably disregard the seemingly rational opinion of many scientists, who have questioned its effectiveness due to lack of proof. My heart would probably rule my head on this one, with the emotional response of "what have I got to lose?".

    "Where there's life, there's hope". I gleen hope from the fact that many drugs trials are currently taking place, and hopefully these will have a positive outcome for future generations, if not for us. Also, I hope there will be more international collaboration, so that the time it takes for drugs to be approved for use in more than one country will be greatly reduced.

    Best wishes,
    Kayleigh x
    Just take every day as it comes. Edarvrone to me is horrific. You have to be linked up to a drip every day for two weeks!! And then no real proven benefit! So a treatment that makes you less mobile for 2 weeks a month!!! And we are immobile anyway!

    Thatís some burden! It needs to be a pill for any small or marginal drug.

    I know it is an obvious fact, but we are living in the best time for having this disease. The power for social media and the community will come when there is a true breakthrough. Once a true treatment is found, old approval processes will fall by the wayside and that is when we should start petitions etc etc. But not just yet.

    Letís keeping rocking guys!

  2. #22
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Thanks Lee. I think I'll forget about Edavarone, and keep my fingers crossed for the other possibilities becoming a viable reality.

    In the meantime, your advice to 'keep on rocking' sounds good to me! Now, where did I put that Status Quo CD?

    All the best to you and your family,
    Kayleigh x

  3. #23
    Thanks Lee for your very helpful posts.

    Just to flesh out the discussion a little around drug discovery –

    In general, drugs need a target. That means research has to be done to understand how a disease works, with the aim of identifying some step in the process where pharmacological intervention might be disruptive and successful.

    As a result of painstaking research by medical scientists over many years, we now know a hell of a lot more about MND than we did two or three decades ago. But so much is still unknown. Research teams around the world are still putting together the MND jigsaw. And the MNDA is helping to fund that, along with comparable organisations in other countries.

    By coincidence, I had a brief insight into some of the Australian research last July when I was at Macquarie University for a conference on another field of science entirely. I was given a tour around the MND labs and met many brilliant, dedicated people doing amazing research. They were, however, very happy to acknowledge that they were still a long way away from understanding many of the cellular and molecular processes involved in our disease, especially in sporadic MND.

    Ever since I was diagnosed, I’ve volunteered to help with the various projects being conducted by equally brilliant researchers at the John Radcliffe Hospital in Oxford. Up to now this has mainly meant having blood and cerebrospinal fluid taken at intervals. But in a couple of weeks’ time it will involve an hour in an MRI machine wearing a “hat” covered in sensors and doing various tests while my brain is scanned in real time. None of this will lead directly to a new wonder drug, but it may help to shed a little more light on how MND progresses.

    There is also the possibility that research on other neurodegenerative diseases could throw up signposts for MND scientists. As I understand it, CuATSM was originally used as a contrasting agent in the imaging of hypoxic cancer cells.

    One day…….


  4. #24

    Good stuff. I took part in one 3 years ago. It was fun. Make sure you get a copy of the scan of your brain. I asked them and they were happy to give it.

    I show it to people who think I am an idiot, Hahaha!

    Yes you are right we are a long way off knowing the precise pathology actions but boy are we moving fast now. The combination of many trials, the genetic project projectmine and the seeds of gene therapy we are getting much closer.

    I suspect we will get a more effective slowing treatment before anything. In reality if we could slow by 50% (a real 50% not just an alsfrs rating) and doubled lifetime, that would be a major achievement.


  5. #25
    This is exactly what I was saying - but in more detail - about drugs and targets. And about common factors between different neurodegenerative diseases:

    Nobody should doubt that much splendid research is being done.


  6. #26
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012

    From The International Alliance of ALS/MND Associations Scientific Advice Council

    Some feedback on the CuATSM Trial...

    Dear members,
    As you may be aware On January 7th, a media release was published stating that CuATSM slowed disease progression by 70% in the Phase 1 clinical trial, resulting in an international outcry for people living with ALS to access CuATSM, This created particularly strong interest in Australia and the UK, but also throughout the rest of the World
    The Alliance were contacted by many of our member organisations for more information and so the Alliance have sought the advice of it's scientific advisory council for a balanced and scientifically accurate response to these claims.

    After studying the data the response from the Scientific advisory council is as follows:

    An Australian company called Collaborative Medicinal Development were funded through FightMND to run a Phase 1 clinical trial of a compound called CuATSM that ended in 2018. The trial was designed only to determine if CuATSM is safe for humans and to determine what dose (if safe) would be ideal to test in a further clinical trial (Phase 2 or 3) that would be designed to determine if it has the ability to alter ALS disease progression.
    CuATSM is a drug that has shown potential to treat ALS in laboratory animal models and was recently studied for human safety in a small Phase 1 clinical trial by the company Collaborative Medicinal Development in Australia. At the doses tested, using clinical grade CuATSM, it was considered safe, but a press release also states that the company has seen a substantial slowing of disease progression. This clinical trial was not designed to make such a public statement and a number of aspects in its design require this result to be taken with as much caution as possible. Essentially, there is no substantiated scientific evidence that CuATSM has any effect on ALS in humans. Furthermore, until there is a peer-reviewed publication of the data, it is not possible at this time to evaluate the safety beyond the claims of the release. A Phase 2 clinical trial is being setup to further test safety and to more rigorously determine if there is any effect on the course of disease. The field remains hopeful that CuATSM will work, but the proper trials need to be done before anything can be known.

    We hope this information is useful to our membership. Within the Scientific Advisory Council there is a significant level of knowledge regarding the pre-clinical data, key investigators and and clinical trial nuances surrounding CuATSM. If you do have any other specific questions that are not answered by this response they can be directed to the Scientific Advisory Council via the Alliance. Please send these questions to

    Kind Regards
    Amanda Bourne
    Alliance Coordinator

    Copyright © 2019 The International Alliance of ALS/MND Associations, All rights reserved.
    You are receiving this email because you are a member or a friend of the International Alliance of ALS/MND Associations.

    Our mailing address is:
    The International Alliance of ALS/MND Associations
    10-15 Notre Dame Mews
    PO Box 246
    Northampton, NN1 2PR
    United Kingdom
    Last edited by Ellie; 8th February 2019 at 17:13.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #27
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Hi Ellie,

    Thanks for the update. Regardless of the caution advised it does sound promising.

    Iím going to do this even if it kills me!

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