"Ask the Experts" - Pre ALS MND Symposium

[rknt50a]

Monday.

Info on web stream

Ask The Experts Session | MND Association

Dublin is 5 hours ahead of US Eastern time.

I hope a lot of people will listen in and submit questions in the web stream area. They've not had internet access for the last few years, and I appreciate having it back.

I don't think they've advertised it well, so please help spread the word. Thanks.

 

[AKNate]

Do you know if we'll be able to watch it after its streamed?

 

[rknt50a]

Do you know if we'll be able to watch it after its streamed?

I don't know but I'll tweet the question to @alsmndalliance and will post what they respond.

 

[AKNate]

Thank you! I'm really interested to see what is said. The time difference doesn't make it easy for me... I'm in Australia & work full time too.

 

[lgelb]

I see nothing to suggest it will be archived, though it certainly should be. There may be some summaries posted during/soon thereafter on the blog.

 

[rknt50a]

@alsmndalliance tweeted back that it will be archived for later viewing.

Unfortunately they are not taking questions in advance. You have to submit while watching.

 

[AKNate]

@alsmndalliance tweeted back that it will be archived for later viewing.

Unfortunately they are not taking questions in advance. You have to submit while watching.

I know someone has to ask this, but i'd love to know what is on the brink of being released as treatment to everyone who has ALS? Is there anything very close? I'm only new to this but am trying to get up to speed. There seems to have been a lot of advancing in the last few years, so i'm hopeful something good will come of that.

 

[rknt50a]

AKN, I just tweeted your question to @alsmndalliance w a note that the time change makes it impossible for you... I'm hoping that they ask your question during the program. We'll see. Thanks.

 

[AKNate]

AKN, I just tweeted your question to @alsmndalliance w a note that the time change makes it impossible for you... I'm hoping that they ask your question during the program. We'll see. Thanks.

Oh wow!! Thank you so much!!!! Fingers crossed there's something out there for all of us ready to be released soon.

 

[Nikki J]

It was well presented I think. Dr Shefner said he was hopeful that something or somethings would be available in the next few years that could ameliorate the course of ALS. I did not get the impression that they expected it imminently with the possible exception of the sod1 gene blocking if it happens to work in its current form.

Dr Glass did say he rather thought in 5 years there would be something other than stem cells that would be the focus

 

[AKNate]

It was well presented I think. Dr Shefner said he was hopeful that something or somethings would be available in the next few years that could ameliorate the course of ALS. I did not get the impression that they expected it imminently with the possible exception of the sod1 gene blocking if it happens to work in its current form.

Dr Glass did say he rather thought in 5 years there would be something other than stem cells that would be the focus

So are they thinking that SOD1 blocking is going to happen soon?

 

[Nikki J]

There is a current trial of this therapy. They are doing multiple doses in sod1 PALS and a single dose in SALS as there is some indication lowering levels MIGHT be beneficial. This is actually the second run for sod1 antisense. They had a trial 3-4 years ago and then reformulated it. They did not speak at length about it. Obviously we are all hoping for good results.

 

[AKNate]

There is a current trial of this therapy. They are doing multiple doses in sod1 PALS and a single dose in SALS as there is some indication lowering levels MIGHT be beneficial. This is actually the second run for sod1 antisense. They had a trial 3-4 years ago and then reformulated it. They did not speak at length about it. Obviously we are all hoping for good results.

We are... It's such a roller coaster, i get really hopeful then dip a little... then back up again! I guess everyone is like that.

 

[AKNate]

I saw RK post this on another forum

You can all listen to the webcast here: Ask the Expert