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10th March 2013, 13:45
Copied this from ALSTDI News

I am excited to share with you today the news that the FDA has approved our clinical trial of TDI-132 / Gilenyaź is ALS patients! This is an exciting step forward, but it is still only a step. We have a long way to go to determine if TDI-132/Gilenya is a potential treatment for ALS. You can read more online or listen to a podcast I recorded on the trial recently.

While we have great hope for this clinical trial, we are also keenly aware that ALS is a complex disorder that will likely take a number of different treatments to truly stop its progression in all cases. We have assembled an extensive pipeline of potential treatments to screen at TDI this year. Being transparent about how we are spending the dollars we receive is important to TDI, and I encourage you to learn more about our current pipeline online by clicking here.

10th March 2013, 14:39
Did a google search,it is used for MS primarily it is Not a cure but is supposed to stop relapses,hopefully it may stop our progression.
There I've started talking like a researcher doctor, it may,could possibly,might,perhaps etc.I am waiting for those two little words "IT WILL"

10th March 2013, 16:22
Hi Bob,
Why not try it on us, we have nothing to loose.just got to be something other than R,
You're right Bob I take your view there will be a number of treatments like there is for cancer,
So lets try a few on people rather than mice or fish.

10th March 2013, 19:12
Evening guys,

We all know the real reason why they won't test on us, it's the culture of claim if you can for every possible thing, and then blame when things go wrong I agree totally,, we will all be pushing up Daisy's and no doubt others will still be debating what we spend our time doing, just how many people have to end their lives in such a dire way, before they actually reach the point realising all the money being raised is not saving lives , it might go some way to providing assistance to help day to day struggles ,but it certainly isn't stopping or even slowing this god awful disease, I hope very soon it may be that spending money on nice venues and giving to research that leads no where, and worse repeating research that has already been done elsewhere, so just hope like all the rest of us, that we see a positive ,result, that isn't like the majority we get, where we have spent years in most cases being fed press releases that in the main justify all the money given and for what, nothing , not one , drug has proved effective, just how many other research fields yield so little, Not being a Doctor, I can only view this ,as pouring cash raised into a well and a bottomless one at that, no other conclusion to reach, than we matter so little in the grand scheme of things , unlike providing aid to overseas countries , digging wells, and generally saving the world, but either don't know or don't care about us , but then again how would anyone know about MND, unless your unfortunate to get diagnosed with it, I may be wrong but in the four years I have had dealings with this condition not one TV program or Media on a national level has ever really pushed this killer into the publics awareness , Saville, MPs failings, Greed, never ending other charity adverts, and still nothing for us .

10th March 2013, 21:19
Hi Guys,
I have got to agree wholeheartedly with Pete. The amount of money poured into research to produce nothing is obscene. It isn't just this country either when the researchers go off on their jollies - sorry to international symposium in Australia or America to network what is happening all they seem able to offer is jam tomorrow. The best hope out there at the moment seems to be stem cells and how many trials are going on at the moment. Brainstorm are doing some work in Israel and planning trials in America and neural stem are planning more in America if they can jump through all the FDA hoops.
It is a pity there is no one here who is gay or famous or a celebrity. When aids arrived and threatened the members of these groupings the world rallied round and provided all the exposure and resources to bring about fairly effective cures in no time. The source of that disease was said to be from people buggering about with monkeys quite literally. This disease as far as i know has no such unpleasant cause and simply strikes indiscriminately at random subjects.
I cannot offer any solution to Pete but I share his gripe that current researchers seem to be running around like headless chickens and the chances of them bumping into anything useful is remote. Research seems to rely on testing mice genetically bred to replicate the familial variant of mnd and then moves on to humans and what had looked promising seems ineffective and yet they continue testing on SODI mice in the believe that next time it will be different. Even a 2 year old recognises that banging your head against a brick wall only gives you pain and stops the behaviour- why don't researchers recognise the same fundamental lesson and change their pattern of behaviour.

10th March 2013, 21:34
Pete, Looking back at the advances in science and medicine over the last 30 years shows what can be done. My father and grandmother died of heart disease that would also have killed me nine years ago but for a simple 10 minute procedure which saved my life. Maybe so with this damn thing that eventually a cure or preventative will be found. Think also of the discovery of antibiotics and not so long ago at that. There is hope I believe with research and trials.

10th March 2013, 22:14
sadly so true, no real understanding let alone progress. Hard work raising funds by us n lovely pow wows for some in great places..... hard not to be cynical. Beggars belief that we still haven't had a response as to what the Picker Institute is costing !! another veneer of help by the looks of it.

10th March 2013, 22:55
Hi G60, still believe in our capabilities in research and science. I guess cos I'm a research scientist myself but in Geology not medical. Advances are truly phenomenal and accelerating with time as I can see in my own research field which was in the development of early life and the world 750 million years ago (phew 750 million!!!!!!! makes my brief 50 year life a puny drop in the ocean of things doesn't it!!!! at that time 750 million years ago there were some blobs of large single cell organisms and multicellular organisms that we dont yet fully understand, 50 years ago they were thought to be not a life form but now they are now - such is research capability. Im thinking of the countless millions of people that died before antibiotics and vaccines were developed by those working ceaselessly in laboratories and research and the recent research in DNA and the like which is a relatively new field of science. Maybe not in my lifetime but I think we will find answers and solutions eventually.

11th March 2013, 14:06

There was a post in patients like me forum today that reports some interesting research published in Nature.


I've checked out the link and it is OK.

11th March 2013, 15:37
Interesting link - thank you.
John - I was recently introduced to the drug Aimpsro - which I see you mentioned in an earlier thread in July.
There is apparently a meeting with the drug company and local neurologist professors in London to explore the use of this drug.
As you mentioned there appears to have been some success with the South African rugby player and others. We have asked for more statistics and an outcome of the meeting to be held early April. I do not hold much hope as the drug has been around for15 years and has a low profile.
Also it is extremely costly. Which may mean they do not intend raising money corporately and users of the drug make them millionaires when the company gets acquired !

I feel if there was a pooling of this worldwide research and knowledge there must be something for us out there.
I agree too much money and time spent on foxes, foreign wells, weapons, political nonsense and not enough on ME ! And of course you !

First little rant - now for a good day tucked up in the warm !

Regards to all


11th March 2013, 17:56
Hi Laila,

Thanks for the link and the picture,


23rd March 2013, 16:24
Hi Rory

I too have been reading about the drug Aimspro. Some patients are being tested in London - the South African rugby player was one of them. So far there appears to have been no adverse effects and the patients seem to have had some improvements. Have you signed the e-petition set up by Les Halpin, to enable terminally ill patients to be able to access new medicines/treatments before they are fully licenced? I am sure many MND sufferers would be willing to try something - what have they got to lose? I appreciate the need for caution, but there is nothing out there at the moment and there hasn't been for about 30 years. Time is a luxury we don't sadly have. It is really heart-breaking to see my husband becoming gradually weaker. Let's hope for some good news soon.

23rd March 2013, 18:20
H Joydy's
Thanks for comments
No, I haven't seen the link/ petition - I would support it - can you advise please?
Zinzan Brooke ( former All Black ) introduced us to the drug following on from the results to his SA rugby colleague. We hope to learn a little more about it soon. From what we have heard - no side affects reported .

Will keep all posted


24th March 2013, 11:45
H Joydy's
Thanks for comments
No, I haven't seen the link/ petition - I would support it - can you advise please?
Zinzan Brooke ( former All Black ) introduced us to the drug following on from the results to his SA rugby colleague. We hope to learn a little more about it soon. From what we have heard - no side affects reported .

Will keep all posted


Hello again Rory

To sign Les's petition go to:

It would be great if all forum members signed.

All good wishes


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