Thoughts on Research

[bear1973]

So having been a part of this board for about a year, it seems that if anyone is looking for any type of "cure" in the next year or 2, it will have to come in the form of almost an accidental discovery. For example, Perampanel or some other existing drug that has an unexpected response to ALS. Lunasin is another example....we know it has helped some.

The process for drug approval just takes too long, unless you're in a trial.

Is that about right?

 

[Manhattanite]

I'm no expert but it would be interesting to see if there are parallels in how most cancers and AIDS were eventually brought under control. Was it the result of the drug approval process or a result of the medical establishment stumbling onto combination therapies?

I was just wondering earlier today if perhaps research and discoveries in other motor neuron diseases such as Parkinson's might lead to a "cure" or control of ALS.

 

[bear1973]

Yes that would be interesting to know. If there was some type of drug that showed huge promise we would no about it here. Who knows - a pleasant surprise would be a miracle at this point

 

[Jocalyn8]

I read somewhere that very few pals take part in research trials and they wonder why...

I believe that having an exclusion for folks on NIV like trilogy (when it is one of the few things we have they have proven actually extends life,) makes it difficult.

So, we have to choose between trial and trilogy....?

Just saying...:-|

 

[Jocalyn8]

Also, we need a high profile individual that becomes a pals.
A beloved actor/ celebrity diagnosed would open the floodgates for funding like it did for HIV/ AIDS. AIDS is no longer a death sentence!

Although, I would not wish this curse on anyone.


Cheers,

Jocalyn

 

[KimT]

I honestly don't think there will be a magic bullet. My inclination is to believe slowing progression or stopping progression will be from some kind of cocktail of drugs and/or supplements and a cure will come much later, possibly from stem cell or even preventative treatment. As long as I'm still here, I will continue to try things.

 

[patoyeah]

AIDS was / is contagious, Cancer more wide spread... if ALS was either it would receive more attention... sorry I know that is obvious.

I do not know of any treatment coming this year, but its always possible, while being unlikely.

infinite uncertainty,

pat

 

[bear1973]

Yes - I'm no fan of Trump although I would never wish ALS on him or any of his family members....that said, if that were to happen, I think you'd see dramatic changes.
It's virtually impossible that a drug will offer a cure in the near future. However, what's to say ALS untangled will look at an alternative treatment and be amazed? Those are the kind of treatments I keep an eye on. I don't think an alternative treatment will necessarily reverse progression, I just think there is a possibility it could SIGNIFICANTLY slow it down....which is getting close to a cure

 

[KimT]

If Trump gets elected, I'll move to Canada.....see you there, Bear!

 

[gooseberry]

I believe a lot of the research currently is on understanding thè chemical and biological causes of als. They have identified a neurotransmitter pathway which allows glutamate to go into the nerves, excite them, but not come out. Riluzole works on that pathway by helping to clear the glutamate from the synapses so they dont get clogged.

They have identified mitochondrial changes, vitamin deficiencies, demyelination, etc as occurring with als. They dont know why. The why is key to develpping a drug because a drug must have something to target. They are seeking genome sequencing on pals in a variety of arenas. This could help identify specific triggers or snp variation, which provide a prevention or treatment target.

Unfortunately it does take time. Trilogy use is a reason to not be included in many trials. They need to be sure you have enough health to make it thru the trial duration. This is one reason they are trying to fast track meds and shorten trial times.