Stand Up 2 ALS @up_als
Husband and father of three. US Navy veteran living with ALS. Blogger to be a voice for living with ALS https://t.co/w1GjTuKoXm Texas, USA Joined September 2018-
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so , supposedly , nurown has been unblinded? I have not seen anything on the x, yet . Anyone who participated willing to disclose whether they believed they received treatment v whether they did or not? curious
it is such a shame to watch something you built fall apart because of ego and cowardice
there are consequences for sweeping things under the rug
right??? The notion that folks on sm will hold sway over the fda is rather foolish .
right??? The notion that folks on sm will hold sway over the fda is rather foolish .
I am out of this shitshow. Some of yall need to think for yourselves instead of regurgitating the drivel spewed by others
This is garbage . "she" has done more than you will EVER DO for ALS. This BS needs to stop. Instead of pointing fingers as if any "advocate" influenced the AC, how about you question why BS dropped the ball .
This is garbage . "she" has done more than you will EVER DO for ALS. This BS needs to stop. Instead of pointing fingers as if any "advocate" influenced the AC, how about you question why BS dropped the ball .
Who the fuck even is this and why does he think anyone gives a shit what he thinks?
Who the fuck even is this and why does he think anyone gives a shit what he thinks?
Fuck anyone who says anything bad about Nadia . I am so fucking sick of this " community". Constant criticism of anyone who doesn't agree with certain agendas. Speaking opinion as fact. The list goes on and on. Feel free to unfollow me . I am done.
Fuck anyone who says anything bad about Nadia . I am so fucking sick of this " community". Constant criticism of anyone who doesn't agree with certain agendas. Speaking opinion as fact. The list goes on and on. Feel free to unfollow me . I am done.
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492 Followers 625 Following Hope is a verb. Hope is the only alternative in the face of uncertainty. Today more than ever. Mobilize. Fight. Make right real.so , supposedly , nurown has been unblinded? I have not seen anything on the x, yet . Anyone who participated willing to disclose whether they believed they received treatment v whether they did or not? curious
NUROWN EAP/RTT PALS DESERVE ACCESS NOW❗️@onein300 @wsucougarbill others inspired post. Lee: if @BrainstormCell convinced N works, MORAL thing is to ENROL former EAP/RTT pals on NEW small EAP & get on with/attract investment for required new ph3.SHOULD TRIAL HEROS GET ACCESS NOW❓
@AlsDads Exactly, Juan. There’s also no room for comparative suffering.
@EvanCampa This must be the best shot at approval. It's a big FU to all but the recently diagnosed. There will never be any studies on those of us with advanced ALS so there will never be any evidence. Feeling defeated.
I was not optimistic about Wed. These documents (both FDA's and B's) paint a worse pic than I imagined. We need to figure out how to do much better than this. People w ALS deserve much better than this.
Eye opening FDA document making clear their rationale for not approving #Nurown…makes you wonder why ppl aren’t questioning or getting angry at BS for not running another study sooner… fda.gov/advisory-commi…
I've been called a lot of things in my life before ALS, during ALS, after ALS. I'm pretty resilient. You can call me a former advocate- I'll admit that stung for about 5 seconds when someone first said it to me last year. Then I laughed and realized it didn't matter. 1/6
@up_als And there are those who are certain they didn’t get the drug due to doing poorly while in the trial who will find out they did get the drug
“Early in the disease” is not a subgroup. It’s a treatment for the whole disease. We don’t say “Mastectomy is a treatment for a subgroup of breast cancer patients early in their disease.”
To be clear: Some of us want the needed trial for NurOwn to start sooner than later. (Tbh a trial underway would have played well w AdCom/FDA.) Some of us want access to NurOwn for PLWALS sooner than later. Some of us don't believe every excuse we hear.
i wish clips like this had dosage info
Man with Parkinson's tries marijuana for the first time
@als_now It matters to people who sacrificed a lot for this trial to know before they die if they want to, Mike. It matters because people are making unfounded claims it helped them in the trial which is irresponsible when not unblinded
@CathyStandish @adamfeuerstein To clarify, my post is about how one can’t make claims about causation and how brainstorm is weaponizing and taking advantage of patients and advocacy groups
Are you a Veteran living with ALS who has not been offered Relyvrio? You aren't alone. We are trying to change this policy, but need people's stories. Fill out this form to help change this policy: iamals.org/action/denied-…
Just needed to remember @sandymorris333 today... moonshineink.com/mountain-life/…
.@becky_mourey dragged me into the IAA Promising Pathways meetings. I was not looking for anything else to do and I’m not a big fan of meetings. I wish she were here to get my thanks now. This is a thoughtful and hard-working group.
I have a lot of thoughts here. For starters, I do not care what you think of NurOwn, the personal and organizational attacks need to stop. They are spreading hate and division and are not helpful. We need to be better.
An Open Letter to the #ALS Community. #EndALS Read more here: bit.ly/44nzeXe
1/Once again @MinoSean shows that education, profession, and $ doesn’t make a person less of a POS. The fact that @HaterAls has jumped in with him in an angry, uncalled for attack on an amazing #ALS advocate should surprise no one. @alsadvocacy does not deserve this treatment.
Honoring those who gave their everything for our country. Have a blessed one.
With May being #ALS awareness month, I support all those fighting for pALS, even if I disagree with their stand on something. However, taking a message that honors those who died in service to our country and turning it into an ALS tweet is not ok. Give the dead their day.
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