I’m Jennifer’s sister (she’s featured at 14:45) she’s a warrior who’s been battling this disease for 714 days. I dream of day when the counter starts over and we start counting the days since she beat it. This video was amazing! Thank you for fighting for my sister and all the amazing pALS. This community never ceases to amaze me!
Excellent video - thank you for your hard work. I am a cALS (caregiver for a person with ALS) my son, Travis, who was diagnosed at age 22, in November 2004 - 5,870 days (16 years). Thank you everyone who has given so much of their time, energy, heart and soul to helping pALS.
from facebook, but with an Amendment: I am floored. I rarely cry, except every day for a few minutes, and this had me sobbing. This video is so beautifully frustrating and awesome and painful at the same time. If anybody watches this video and is NOT moved by it- they have no soul. Eric Stevens, your words in the hotel: "IT'S CRAZY THAT THERE IS ACTUALLY SOMETHING OUT THERE THAT IS HELPING PEOPLE....AND YOU CAN'T GET IT..... (next clip) MENTALLY, I THINK THAT IS ACTUALLY HARDER THAN HAVING ALS" I think we all FELT that moment ripping at our hearts. It is so true. You are a brave selfless, GOOD person. The small detail that you said "PEOPLE" in that statement (not "ME") speaks volumes about your character. Eric Stevens and Amanda Stevens, Mike Henson, Matt Sinnott and Mark Bedwell and Dr. Sinnott and EVERY pAL/cAL in this video: Thank you from the bottom of my tremendously passionate loving and yet enormously frustrated angry heart. Thank you. One part of what I wrote is bothering me, so I am using this platform to correct it: Where I said " If anybody watches this video and is NOT moved by it- they have no soul". I meant to say "If anybody watches this video and is NOT move by it- they have no soul. If a person (?) goes out of their way to take the time and give this deeply painful and yet courageously moving video a "thumbs down", I want to thank you from the bottom of my heart for giving me hope. No matter how terrible ALS can make my body feel and no matter how dark or dreary my thoughts can become- your "thumbs down" is a quick reminder that things could be much much worse for me, thus creating hope. I am blessed, full of gratitude and love ....and I am surrounded by people who love me, every single day. Thank you for reminding me that there is a darker place than ALS and most importantly: Thank you for reminding me that I am not a waste of skin. You are one brave anonymous- thumbs-down giver.
They have been making nurown jump through hoops for years to get to these people... it’s unbelievable how long they are taking cobsidering it works so well and the current approved treatments are completely ineffective
I am not discounting any part of this video, by any means- but if you are too busy to watch a 16 minute video- I suggest you FF to 2 minutes in and watch the joy on Matt Bellinas Face....and then 4:45 minutes into the video and welcome to the world that we with ALS are living EVERY day. (also, Ellen DeGeneres is at 4:45, so if that's what it takes to draw you in- so be it.) HIT LIKE after you watch this video please!!
This is unbelievable that these people have to carry the load of ALS and their own advocacy ... didn’t know this was such a problem shouldn’t be in the USA.
Ive heard rumors that the ALS Association heads of staff pay themselves over $300,000 per year. If that’s the case people should really rethink that organization.
Hopefully, Brainstorm can convince the FDA to give Nurown approval. It's an uphill battle since the data from the phase 3 trial showed a higher placebo stat than they were expecting. Brainstorm was expecting to see response rates of 35% for its drug compared to 15% for the placebo. Instead, its response rate came in at 34.7%, which is close to the 35% it was aiming for. The problem comes from the placebo response rate, which was 27.7%. However, there was a subset of the ALS patients in the trial that were not as far along in the disease that got the expected response rates. Brainstorm is in meetings with the FDA, using that data to try and get another pathway for approval.
![Felix "Unfair" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/Oswujxm2Ag0/mqdefault.jpg)
I’m Jennifer’s sister (she’s featured at 14:45) she’s a warrior who’s been battling this disease for 714 days. I dream of day when the counter starts over and we start counting the days since she beat it. This video was amazing! Thank you for fighting for my sister and all the amazing pALS. This community never ceases to amaze me!
I emailed my representatives about this issue before and I'll do it again! Inspiring video ❤
Email and call them across the country they need to hear your voice
Excellent video - thank you for your hard work. I am a cALS (caregiver for a person with ALS) my son, Travis, who was diagnosed at age 22, in November 2004 - 5,870 days (16 years). Thank you everyone who has given so much of their time, energy, heart and soul to helping pALS.
Informative didn’t know this was all going on thanks Teams Steven’s Nation snd No Excuses great job !
from facebook, but with an Amendment: I am floored. I rarely cry, except every day for a few minutes, and this had me sobbing. This video is so beautifully frustrating and awesome and painful at the same time. If anybody watches this video and is NOT moved by it- they have no soul. Eric Stevens, your words in the hotel: "IT'S CRAZY THAT THERE IS ACTUALLY SOMETHING OUT THERE THAT IS HELPING PEOPLE....AND YOU CAN'T GET IT..... (next clip) MENTALLY, I THINK THAT IS ACTUALLY HARDER THAN HAVING ALS" I think we all FELT that moment ripping at our hearts. It is so true. You are a brave selfless, GOOD person. The small detail that you said "PEOPLE" in that statement (not "ME") speaks volumes about your character. Eric Stevens and Amanda Stevens, Mike Henson, Matt Sinnott and Mark Bedwell and Dr. Sinnott and EVERY pAL/cAL in this video: Thank you from the bottom of my tremendously passionate loving and yet enormously frustrated angry heart. Thank you.
One part of what I wrote is bothering me, so I am using this platform to correct it: Where I said " If anybody watches this video and is NOT moved by it- they have no soul".
I meant to say "If anybody watches this video and is NOT move by it- they have no soul. If a person (?) goes out of their way to take the time and give this deeply painful and yet courageously moving video a "thumbs down", I want to thank you from the bottom of my heart for giving me hope.
No matter how terrible ALS can make my body feel and no matter how dark or dreary my thoughts can become- your "thumbs down" is a quick reminder that things could be much much worse for me, thus creating hope. I am blessed, full of gratitude and love ....and I am surrounded by people who love me, every single day. Thank you for reminding me that there is a darker place than ALS and most importantly: Thank you for reminding me that I am not a waste of skin. You are one brave anonymous- thumbs-down giver.
Mike Henson YOUR ARE A ROCKSTAR!
Full support to you pALS! I'll keep sharing the message as much as I can.
THANK YOU!
Tony, thanks for all your work on this!
Great video so informative
2,161 days. And yes, it sucks! Thank you Matt, Eric & Amanda and everyone that is behind our fight. Time is not on our side.
How long has this been going on that the fda has approved this treatment
They have been making nurown jump through hoops for years to get to these people... it’s unbelievable how long they are taking cobsidering it works so well and the current approved treatments are completely ineffective
Timmy sent me love the vid keep grinding
Very informative video more people need to know about ALS and it’s effects. How can we help
I am not discounting any part of this video, by any means- but if you are too busy to watch a 16 minute video- I suggest you FF to 2 minutes in and watch the joy on Matt Bellinas Face....and then 4:45 minutes into the video and welcome to the world that we with ALS are living EVERY day. (also, Ellen DeGeneres is at 4:45, so if that's what it takes to draw you in- so be it.) HIT LIKE after you watch this video please!!
incredible how many people in there 30's and 40's in that list
Where did you go in South Korea?
There is Lou Gehrig clinic in Hanyang university hospital.
What about in 2022.
This is unbelievable that these people have to carry the load of ALS and their own advocacy ... didn’t know this was such a problem shouldn’t be in the USA.
The ALS association is a joke. Never donate a penny to those despicable people.
Ive heard rumors that the ALS Association heads of staff pay themselves over $300,000 per year. If that’s the case people should really rethink that organization.
Hopefully, Brainstorm can convince the FDA to give Nurown approval. It's an uphill battle since the data from the phase 3 trial showed a higher placebo stat than they were expecting. Brainstorm was expecting to see response rates of 35% for its drug compared to 15% for the placebo. Instead, its response rate came in at 34.7%, which is close to the 35% it was aiming for. The problem comes from the placebo response rate, which was 27.7%. However, there was a subset of the ALS patients in the trial that were not as far along in the disease that got the expected response rates. Brainstorm is in meetings with the FDA, using that data to try and get another pathway for approval.
Correct. Plug in a REAL placebo number and this trial is a home run