Nightline Segment on ALS

sassy

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I have watched a number of webinars on Nurown and some of the top neurologists truly appear excited about the response. Since als is actually many different diseases- isn't it encouraging that some folks are having a positive response? I realize it's still in phase 3 and we don't have all the data outcomes.... but nice to feel a bit of hope...
 

lgelb

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That perky advice will happen, no doubt. "Inspiration porn" is rife in ALS and other devastating diseases. For example, if you read the ALSA site and nothing else, you would get a very warped view of the realities.

NurOwn is significant, whatever its efficacy in whomever, because Brainstorm and others have made technical improvements in how stem cells are handled, transfused, etc. But that doesn't sell papers, if you will.
 

nona

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As far as I know, bulbar pALS could not participate in any Nurown trials. That certainly limits the results and dims hopes.
 
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Lkaibel

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It is absolutely true Lauri re the inspiration porn and the ALSA website.

I appreciate all that our local ALSA chapter was able to do for us. I am however maybe a little jaded by the site selling a bunch of people who have lived 15 years and counting last I looked. I suppose if it raises funds, great but honestly I would not direct anyone there whom I really wanted to understand ALS.

I feel like I am just now beginning to raise my head up over a horror show, not a Hallmark movie.
 

vltsra

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Yes unfortunately my PALS is very enchanted by Brainstorm and spends more time than I would like looking at videos of Matt Bellina on his cell phone. He keeps asking me about the trial. Of course I try to be hopeful but also try to gently tell him that we don't know if it works for everyone and we just have to wait for the results of the trial. My understanding was that it is not $100K but $300K if you are paying out of pocket. He is over 60 so did not qualify for the clinical trial. Now is having some bulbar symptoms as well as compromised breathing.

We decided against trying Radicava because we could not qualify for home infusion, so that would mean he would have to go to an infusion center daily 10 days on/10 days off. I think that would exhaust him even more.

V
 

Lkaibel

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V, yes I recall on Radicava we started on home infusion, being told it would be covered only to learn there would be a 2500 monthly co-pay if we continued at home instead of in clinic. That was highly suspect to me since clinics involve paid staff whereas I would have been working the home infusions. Very strange Medicare rule indeed, then drug was not good for Brian anyway...

As to the Right to Try cost, 100k or 300k is completely unaffordable for most people and out of the question. That makes it all the more important that we find our ASAP if Nurown/ Brainstorm is a go. The frustrating part of I for one first heard of people with great results 3 years ago and it’s still in trials.

Radicava on the other hand hit the market after so little research in one specific population that it was/is basically like a trial drug Medicare pays big bucks for.
 

blitzc

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I can just see someone who watched that Nightline article approaching a PALS or CALS all excited and telling them they need to get on that Nurown stuff so they can get cured.
My husband had a text last week, while on our vacation, from a very close friend of ours who saw the show on TV and wanted him look into this therapy to help me before I progress more.

So it begins...
 

Doglady

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Nikki and all-
I didn’t love the Nightline show either. The current status and scientific knowledge of ALS is still such a conundrum that a show like this one is unable to do it justice.

But, do want to say that the Neals webinar (recommended earlier in this thread by Nikki) was quite interesting and left me more hopeful than I’ve been for a long time. Thanks, Nikki!
 
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