Top Tweets for #ALSclock
Over six months to get from grant announcement to first patient receiving EAP? That's a long time... a very long time. #ALSclock https://t.co/P4ZL5Qu3Qc
The ACT for ALS Expanded Access to #pridopidine program has enrolled the first patient! Sponsored by @NIH, and run by @MGHNeurology Sean M. Healey & AMG Center for ALS, in collaboration with Prilenia. The EAP will support pridopidine treatment for up to 200 #ALS individuals for up to 2 years in up to 45 U.S. sites. The PR can be read here: https://t.co/2RH2yiDxyJ
WOW! Download & read this powerful statement by @PatriciaManhar1 in support of #NurOwn's approval.
https://t.co/Mv7ewzjGiQ
#NurOwnWorks
#NurOwnPreservesFunction๐
#ALSclock
@FDACBER
@DrCaliff_FDA
@RepBradWenstrup
With all due respect, @alsadvocacy, time is running short for my daughter and everyone living with ALS. Please use your advocacy efforts to give them a chance NOW to live. #nurown #ALSClock
If you care about ALS legislation, please sign up to be on our constituent list so we can kick some ALS faster.
#ALSclock
#BetterTogether
The Legislative Affairs Team needs YOU! They are amassing a group of people to represent every Congressional district in the US. This will help make sure that ALS advocacy reaches every corner of the government. Sign up to become a constituent: https://t.co/45OiWQ5HUu
Let's Talk Trials!
Check out our blog, where we discuss the urgency in getting an #ALS diagnosis & factors that impact your ability to qualify for & choose a #clinicaltrial.
#EndALS #ALSclock #neurology #LouGehrig
#Neurotwitter #Medtwitter #familypractice https://t.co/PN2UDk7skN
Senate Bill #1590,Justice for ALS Veterans Act,is moving.Will @GrassleyPress & @ChuckGrassley be an ALS champion for his constituents and sign on to this piece of vital legislation?This needs to pass because the #ALSClock is relentless & time isn't on their side.
@alsadvocacy Having a goal is perhaps better than not having a goal, yet a target of 2030 is a death sentence to 95% of all PLWALS today.
#ALSClock
The #ALSclock is ticking...
๐นFeb 6 - FDA accepted @BrainstormCell's BLA
๐น113 days have passed
๐นโ 1800 people have #DiedWaiting
@FDACBER @DrCaliff_FDA
Please announce the ADCOM date
@POTUS @SecBecerra
Wait is torture to people fighting for their lives
#ALSAwarenessMonth
Day 9 #ALSAwarenessMonth Facebook memory popped up 2 years ago we were begging for EAP. Tonight @endthelegacy celebrated its approval. The #ALSclock stops for no one. We must fight faster #SOD1 #ALS
Mom begging @US_FDA for regulatory flexibility for sons w #ALS
๐น2015 #NurOwnWorks in P2
๐น1.20.16 Tofersen P3 starts
๐น2019 #NurOwn halts #ALS in P3
๐น7.25.20 Ethan died
๐น8.01.21 John #DiedWaiting
๐น4.25.23 #Tofersen approved
@DrCaliff_FDA
#ALSclock
#ALSawarenessmonth
ALS Awareness month. I am so sorry John we were not in time for you and your brother. Mommy loves and misses you and Ethan so so much I will never stop my boys
In America, if you have a
100% fatal #RareDisease like #ALS
& a safe trial drug helps you STOP DYING,
you can #DieWaiting for @US_FDA approval.
@POTUS & #ALScaucus
We must overhaul regulatory laws
The #ALSclock waits for no one
#TypeIIErrorsKill just like unsafe drugs
.@US_FDA, we are asking you to please act now. Please allow #NurOwn a transparent and informative Advisory Committee meeting. (5/5)
@DrCaliff_FDA
@FDACBER
@Statnews
@Ap_FDAwriter
@newsweek
@FedcourtJunkie
@edsilverman
#ALSclock
#AdComm
The #ALSclock is ticking...
In #ALS, #NurOwn halted paralysis for some in:
๐นP2 in 2015
๐นP3 in 2017-19
๐นRTT in 2019-20
๐นEAP in 2021-22
@DrCaliff_FDA
How many THOUSANDS more will @FDAcber sacrifice to #TypeII errors when #patientexperiences corroborate that #NurOwnWorks?
3+ yrs ago, @pjgreen asked for urgency in getting #DrugsInBodies
๐นIn P3 & EAP, he knows #NurOwn works on #ALS
๐น@FDACBER didn't listen to #patientexperiences, now Phil's lost function is a #TypeII error
@DrCaliff_FDA
When will regulators start acting on #ALSclock?
#BENEFITact
@Lance4good @wordpressdotcom I would have loved to have attended this meeting (even remotely) and represented the โnot-so-patientโ patient community. We need all stakeholders to understand the urgency that we need be operating under to get access to these promising new therapies. #ALSClock #EndALS
Changing oil, brakes, sparkplugs & other vehicle maintenance. Building/Fixing computers & other electronics. Missing sporting events. Teaching you how to tie a tie. Teaching you how to drive. Being there whenever you feel your in over your head. All & more taken away by #ALS
Nothing is fast enough to beat the #ALSclock. We need warp speed for any promising therapy when death is fast and ๐ฏ certain. Please stop protecting us to death! @US_FDA @DrWoodcockFDA @FDACBER
"As such, we stand ready to use the expedited development and approval programs available to help bring new treatments for ALS to patients as quickly as possible." https://t.co/ugCn7Gokxl @US_FDA
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