Shelly Goettl
@goettlshelly
ID: 1137693974527918080
09-06-2019 12:12:35
357 Tweet
83 Followers
152 Following
axeALSFoundation Nanette D. Barragán Dr. Robert M. Califf Tracy Beth Høeg, MD, PhD Dr. Jill Biden Dr. Janet Woodcock This picture alone should erase any doubts about #NurOwn. Those who know Eric (and have since he entered the #ALS community) know exactly what this picture means and why: SUCCESS. From fast progressor to nearly stable- this is an EPIC #ALS result. Losing NurOwn would be a crime.
Nicola Waters Help us fight in the US to get #NurOwn approved. We KNOW #NurOwnWorks. Sign the petition at IAMALS to ask the FDA to give people a public AdCom meeting where neurologists & people share their stories. iamals.org/action/sign-th… #NoAdComNoVoice
Scott died of #ALS this morning leaving behind a devastated wife & 2 daughters. As a society, how do we allow this to go on? 153 years that #ALS is 100% fatal & NO URGENCY at FDA Biologics & Dr. Robert M. Califf. @RepAnnaEshoo Brett Guthrie Jan Schakowsky @SenatorBraun Rosa DeLauro @RepLBR
We've been fighting non-stop for #NurOwn BrainStorm C Lebovits 🔹What's outcome of Type A meeting? 🔹Did FDA Biologics agree to AdCom? 🔹Did U.S. FDA agree that people w #ALS & #neurologists have a right to share #RealWorldEvidence that NurOwn improved how they feel & function?
My son Kade was 21 in the Ph 3 #NurOwn trial is #DyingWaiting to hear how the Type A meeting went today C Lebovits. Will FDA Biologics allow those with #RealWorldEvidence share their experience that #NurOwn slows/halts paralysis & has allowed some to restore function? #NoAdcommNoVoice
My son Josh is 33 yrs old and is #dyingwaiting for the results of a Type A meeting C Lebovits. FDA Biologics, we can't continue waiting. There is #realworldevidence that #Nurown improved breathing, strength & restored some function for my son. Rep. Doris Matsui Rep. Diana DeGette
Eric is #DyingWaiting for the results of Type A meeting. C Lebovits FDA Biologics will you let us share #RealWorldEvidence that #NurOwn halts paralysis & restores function?
I was in the Ph 3 #NurOwn trial & I'm #DyingWaiting to hear how the Type A meeting went C Lebovits. Will FDA Biologics allow those with #RealWorldEvidence to share their experience that #NurOwn slows/halts paralysis & has allowed some to restore function? #NoAdcommNoVoice
27-year-old Megan died of #ALS. Dr. Robert M. Califf, HOW MANY MORE HAVE TO DIE before the FDA Biologics treats 100% FATAL ALS with the same URGENCY/FLEXIBILITY as cancer treatments? Congress, DEMAND an #AdComm hearing for #Nurown to allow #RealWorldEvidence of efficacy shared publicly.
Thanks for the update BrainStorm. U.S. FDA there are so many people asking, hoping, praying for an #ADComm meeting for #NurOwn. Pls give the data a chance to be reviewed publicly. When there's so little hope in #ALS pls do what you can. Dr. Robert M. Califf FDA Biologics
Debating whether or not to allow dying patients access to effective new #ALS drugs feels exactly like this: #NUROWNWORKS #NOADCOMNOVOICE #FDA BioSpace SportsTravelAndTours Biogen BrainStorm @NMEALS The ALS Association ALS Forums & Chat ALS TDI ALS Canada MND Association MND Australia ALS/MND Alliance
MedPage Today MedPage Neurology Judy George I am a board-certified anesthesiologist and pain management physician with ALS. So tired of people talking about NurOwn data without understanding the trial when their lack of understanding is killing me, thousands of my friends, and their children. 1. ALS endpoints are
Shame on Dr. Robert M. Califf & Director of the FDA Biologics, Peter Marks. There is the blood of #ALS patients on both of your hands. #NurownWorks #NurownIsSafe #CriticalUnmetNeed #BloodOnYourHands You killed an effective treatment for hopeless #ALS patients. Congress, it may be you or