Nightline Segment on ALS

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Hi all. I’m never sure where to post general comments like this, and I hope I’m not violating any forum rules. Yesterday Nightline ran a segment looking at the five year anniversary of the Ice Bucket Challenge and highlighting three PALS-Thurman Maynard, Sarah Olson, and Pete Frates. Worth a watch on YouTube. Kevin
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
52
Reason
CALS
Diagnosis
09/2017
Country
US
State
South Carolina
Thank-you, Kevin

I was able to watch Part 1 on YouTube, but couldn't find Part 2 there. But I did find it here.


Ken
 
Last edited by a moderator:

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,281
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
I’m thinking you could find elsewhere on the web too. Sounds interesting.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Thank-you, Kevin

I was able to watch Part 1 on YouTube, but couldn't find Part 2 there. But I did find it here
Thank-you, Kevin

I was able to watch Part 1 on YouTube, but couldn't find Part 2 there. But I did find it here.


Ken
Thanks for posting Part 2, Ken. I’m curious about the “groundbreaking” meeting between Brainstorm and the FDA that was mentioned and apparently just occurred. Kevin
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,281
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
I watched both parts, first one I got on U Tube which was cool because I could see on Roku.

I like that it filled people in on what ALS actually IS. The featuring yet again of the youngest PALS not as much. They mention the average age of 55 at Dx, but as much recent media representations focus so much on the young people end up thinking it’s a youthful disease.

I also would’ve appreciated a mention that vets have a higher instance.

Once again, we see stunning results from a Brainstorm trial of stem cells. This has been in study in multiple countries for multiple years, yet no public availability accept under “right to try” aka, right to spend 100k. I’d really, really like to know more on progress on this piece. The man shown is not the only one experiencing stellar results IN this trial. Random stem cell stuff has not done much but make unsavory people richer. What gives?
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
55
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
I watched both parts, first one I got on U Tube which was cool because I could see on Roku.

I like that it filled people in on what ALS actually IS. The featuring yet again of the youngest PALS not as much. They mention the average age of 55 at Dx, but as much recent media representations focus so much on the young people end up thinking it’s a youthful disease.

I also would’ve appreciated a mention that vets have a higher instance.

Once again, we see stunning results from a Brainstorm trial of stem cells. This has been in study in multiple countries for multiple years, yet no public availability accept under “right to try” aka, right to spend 100k. I’d really, really like to know more on progress on this piece. The man shown is not the only one experiencing stellar results IN this trial. Random stem cell stuff has not done much but make unsavory people richer. What gives?
Right on all counts, Lenore. My cynical side says the three most reported Brainstorm improvements-Matt Belinda, Mark Bedwell, and now Thurman Maynard—are unique to those individuals and not necessarily able to be replicated in other patients. A recent update from Matt said his core strength continues to improve, but it has done nothing to improve his speaking, which took a dive over the last few months. I really want to believe, but a part of me is afraid of Fools Gold. K
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,281
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
I too always hesitate at the impending miracle. Radicava was a drug I wish we had not encountered, and that was never touted as a miracle.

I am confident that if I live another couple of decades, a drug combo will be found to seriously check and possibly even stop progression. In that way I am optimistic.

I think back to caring for AIDS patients in the late 80’s and hearing it was all hopeless. Now some have been around decades as HIV+.

I know this is neurology and that’s one tough thing, but we WILL get there.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,576
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
A lot of the issue relates to the fact that ALS is a group of diseases really and we need therapies that address the underlying issues of the individuals which s just starting to happen. A lot is happening in research and trials are changing. If you are interested in these issues and missed Dr Cudkowicz’s webinar yesterday it is archived on the NEALS site ( google NEALS ALS). Worth listening
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,333
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Another thing that is misleading about showing the video to the public about Thurman Maynard and Matt Bellina improving is that we don’t have all the results back from the Nurown Phase 3 study. We don’t know if everyone receiving it will improve, or just certain subgroups, or if the improvements will even be maintained. We don’t know about side effects. We don’t know how long treatment needs to be continued as I strongly suspect PALS will relapse once off it.

Unfortunately people who see these videos and don’t know all the details may be lulled into thinking this is a cure, and it’s not. I also feel sad and angry because I’m pretty sure that by the time it is released (assuming it really works and passes all the benchmarks to get approved), it will be too late for me and others here. Just my 2 cents.

I will listen to that NEALS webinar. Those tend to be well-presented and are free from hype.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,281
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
Agreed on all of that Karen. I think in the relatively recently Dx’d false hopes are easily nurtured too. I still remember the twit of a nurse who told Brian AT the ALS Clinic that he should be tested for Lyme. Welp, he actually had been tested, but insisted on going to his GP for a new test, which was negative and it would not have mattered if it were positive.

It took a bit to get him over the emotional setback.

I love giving my press to the disease but I think media needs to be careful and look at the big picture too.
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
52
Reason
CALS
Diagnosis
09/2017
Country
US
State
South Carolina
Brainstorm-Nurown is certainly not without controversy, as evidenced by the discussion in this, and other, forums. To add another perspective, here's a view from the Israeli press.

Another downside of the NightLine segments suggesting a cure may be at hand is that people will reduce or stop contributing to research on ALS. And that, is truly sad.

Ken
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,281
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
ALS is so poorly understood, and the media tends to get what little we do know wrong as a result. I think the quality of information is so much better about cancer and even heart disease. You just wish sometimes they’d call a certified center and get some info outside of whatever PALS they are featuring. Each person is unique with it in so many ways.

As our Doctor even use to say, Brian had HIS ALS, others have theirs. There is a woman, April M. Who has run a site out there that had dramatic results with Nurown and then
Went rapidly downhill once she was out of the study.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,333
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
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.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,281
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
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.
I rarely quote but quoting this in full because the thought is wretched.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,333
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Stranger things have happened.
 
Top