Top Tweets for #ALSBIAS
A comparison, and then a question: Which #ALS drug was @FDACBER approved? WHY ONLY ONE? #ALSBIAS #NUROWNWORKSTOO @alsassociation @ALSUnitedCT @ALSofGNY @ALSUnitedChi @ALSunitedOhio @ALSunitedOhio @statnews @FDACBER @DrMakaryFDA
Wow. Suddenly, "research shows" people "regaining function" with @alsassociation sponsor's drug, while MANY #NurOwn patients who stabilized were lying? In my opinion #ALSA is by far the worst run, most diabolical organization for any chronic disease...EVER. #ALSBIAS #sponsorswin
1/3 Remember pALS, the "experts" haven't been right very much lately. As the @FDA chief herself said: "...patients are really the biggest experts in their own disease". The fact is, #ALS "leadership" contains almost no patients. Then why is #ALS still stuck? #ALSBIAS #BADCHOICES
Spike the football a decade late all you want @alsassociation over something #NME members were yelling in 2019: #ALS progression could be HALTED. Not for 2% of all patients, but many! Explain why T-REGS was not pushed as hard as others despite $70M+ in your bank? #ALSBIAS #endals
Tofersen works. We've known this for years & VALOR provided proof. It is also the MOST important scientific tool we've ever had for all ALS/MND. It represents proof of concept for transformational treatment of everyone with ALS if we have the correct target & hit it early enough.
@ConnectingALS @alsassociation @US_FDA @biogen 2] To be clear, real advocates don't want only #Tofersen approved- they want BOTH #NurOwn + #Tofersen access. And the data says YES! That is, assuming no #ALSBIAS present. Then WHY is it, @alsassociation? Nothing to do with your history of pushing for drugs you stand to $ from?
@ConnectingALS @alsassociation @US_FDA FYI: Tofersen failed Ph3, missing all endpoints. But, since @biogen is a major sponsor of @alsassociation it is treating a therapy that may help 2% of pALS - at most- (including me) FAR better than wider ranging drugs with clinically significant data (p=.05), #NurOwn. #ALSBIAS
Here's what somebody "is missing." First, pALS are too smart for BS. Second, it's only possible to miss the blatant #ALSbias here if you choose to ignore what has been happening (and said) over the last 6 months, including the following items: #NoAdComNoVOICE #NUROWNWORKS
@Jeanc9orf72 Welcome to #ALS, right? We've been saying it a long time- #ALSBIAS is real. The concepts of "enough improvement", or "good enough" are certainly NOT in the eye of the beholder for each new potential #ALS drug approval. Instead, it remains firmly in the eye of the unaffected.
Preach #ALS #ENDALS #nurownworks #ALSBIAS #medicaldiscrimination @cnn @biospace @statnews @BrainstormCell @biogen @mndanz #MND @mndcampaigns @MND_RWB @AsociacionELAar @AlsPortugal *NME* https://t.co/ogi6IXMnv6
I feel like quietly but rowdy show up to where the ALS ASSOCIATION DOES ANYTHING WALKS FUNDRAISE. We can bring awareness to those that follow and believe in them.
To think, #ALS has wasted so much time now debating whether drugs that we know are highly effective for some are "effective enough" for approval or not. This man's fight is but one cost of #ALS'rank stupidity: #NurOwnworks #noboobyprizes #ALSBIAS #NOTyourcommunity
The muscles in my lower back are decaying, and my right ankle and calf are atrophied. The stairs are a hundred times more intimidating now than they were two months ago. I ABSOLUTELY MUST climb the stairs to get to the bath. I know I'm better off than most!
@VPResearch_ALS Nobody thinks you have been rude- just biased. π "Every point (lost) on the ALSFRS-R scale is accompanied by a 7% decline in quality of life". 2 points is HUGE. SO, have you seen that study? BTW, #NUROWN achieved MORE in some. #ALSBIAS π Ilse, Soc Indic Res (2015) 120:871β882
This is the sort of optimism we need to get #DrugsinBodies for #ALS. The chair of the International Alliance of ALS/MND promoting #Tofersen. But why was it among the first to rush to declare #NuOwn's Ph.3 data a failure? Now, in proper light we see the bias. Correction? #ALSBIAS
Anyway, this was just one of a few points for anyone who might be wrestling with the apparent contradiction between the headlines that say "failed trial" & some language to the opposite. /5
Last Seen Hashtags on Sotwe
Lanolinthesheep
Seen from Colombia
zorla #ifΕa
Seen from Turkey
ΰΈ§ΰΈ΄ΰΉΰΈ¨ΰΈ©
Seen from Thailand
ηδΈ
Seen from United States
MINICHAT
Seen from Russia
LegsUp
Seen from India
UttaraKannadaPolice
Seen from United States
ayoor
Seen from United States
imgforΰΉΰΈΰΈ΅ΰΉΰΈ’ΰΈ
Seen from United States
minichat minichat filter:videos minichat minichat minichat
Seen from Brazil
Most Popular Users
Elon Musk 
@elonmusk
241.7M followers
Barack Obama
@barackobama
119M followers
Cristiano Ronaldo
@cristiano
114.6M followers
Donald J. Trump
@realdonaldtrump
111.9M followers
Narendra Modi
@narendramodi
107.2M followers
Rihanna
@rihanna
98.7M followers
NASA
@nasa
92.4M followers
Justin Bieber
@justinbieber
91.8M followers
KATY PERRY
@katyperry
90.1M followers
Taylor Swift
@taylorswift13
84M followers
Lady Gaga
@ladygaga
75.5M followers
Virat Kohli
@imvkohli
73.5M followers
Kim Kardashian
@kimkardashian
70.9M followers
YouTube
@youtube
68.8M followers
Neymar Jr
@neymarjr
66.5M followers
Bill Gates
@billgates
65.3M followers
Selena Gomez
@selenagomez
63.1M followers
The Ellen Show
@theellenshow
62.3M followers
CNN
@cnn
61.8M followers
X
@x
60.7M followers