SOS 4 ALS
@SOS4ALS
Advocate for people with ALS. This "rare" disease has taken 3 from my life. *Drugs in bodies, hope for souls NOW.* Opinions expressed are my own.
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@RuvatiUSA I had one of your workstation sinks installed. I can not get the adhesive from the sticker off with oil and a microfiber cloth. How very disappointing that you would put a consumer in this position. @RuvatiUSA how do I remove the adhesive without ruining the sink?
Just in the last 12 months, there have been 15 Accelerated Approvals for oncology treatments. These treatments ALL require postmarketing confirmatory trials to verify clinical benefit. FOR YEARS so many have fought & #DiedWaiting for the same @US_FDA urgency/flexibility for…
An update of ALS Signal shows a trial for people with disease onset ≤ 5 years. It’s rare that people who have had symptoms greater than 24 mo. are eligible to participate in trials. Check out Cellenkos’ CK0803 (Tregs) Phase 1 trial now recruiting. iamals.org/get-help/als-s…
My son, Josh is #livingproof that #Nurown works. His breathing improved significantly!! He is 33 years old, 5 years since onset of #ALS.
Good read about how @Cigna prioritizes $$$ over patient care propublica.org/article/cigna-…
.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @JohnCornyn @tedcruz #ALS
#Nurown WORKED for my mama - thx to EAP: my family and the #ALS community got to soak up 2 more precious summers of @sandymorris333 magic💫 #NurOwn worked in the final phases of #ALS for my person, I wonder the effect this treatment might have on a newly diagnosed #PLWALS ?! ✨
.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @JohnCornyn @tedcruz #ALS
This is what we'e been fighting for! Thank you @DrCaliff_FDA & Dr Peter Marks of @FDACBER for hearing the pleas of the #ALS community. People like @klink52 @kandysimons @stevens_nation @ThurmanTough @Debbellina @Smithstrongmom1 @pjgreen & @nicolecimbura know #NurOwnWorks
.@DrCaliff_FDA @US_FDA the #ALS community delivered you a petition to grant #NurOwn a transparent & informative AdCom 3 months ago. While we wait, people have died from this 100% fatal disease. Provide the flexibility & speed you promised for ALS. Schedule The AdCom. #EndALS
Every single day ALS families are dying while we wait for a vote on this effective therapy. @FDACBER @DrCaliff_FDA please schedule the vote on NurOwn. The world is watching and waiting for you to take action.
#NoAdComNoVoice #EndALS #US_Fda #FDACBER #NurOwnWorks @RepKeithSelf @SenTedCruz @JohnCornyn @DrCaliff_FDA
Augie died of #ALS yesterday. HOW MANY MORE HAVE TO BURY LOVED ONES before @DrCaliff_FDA @FDACBER treat 100% FATAL ALS with the same URGENCY/FLEXIBILITY as cancer treatments? Congress, DEMAND an #AdComm hearing for #Nurown to allow #RealWorldEvidence of efficacy shared.…
Sometimes we need to look at our working agreements to the American people. @DrCaliff_FDA As public Servants please help those living with #ALS today by remediating the #NurOwn type 2 error. Delays=Death. Speed up innovation so pALS have a chance to improve their health.
.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @RepKeithSelf
.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @JohnCornyn @tedcruz #ALS
I am living with a terminal disease. I am also a patient advocate. I am a damn good advocate, but I need your help. The more followers I have, the more I can get government and pharma to pay attention. So my ask is: Will you follow me so we can change the world?
Thx @DrCaliff_FDA for recognizing AdComs must be overhauled. Start w #NurOwn so people w #ALS who halted paralysis or regained function are allowed to testify, along w their world renown #neurologists. Their #RealWorldEvidence is probative. raps.org/news-and-artic… @RepAnnaEshoo
Naval Academy grad & USMC #veteran, Tyler died of #ALS at 37 yrs old. Tyler deserved access to every drug in the medical arsenal to fight the disease he got from serving our country Tyler deserved #NurOwn Tyler's kids deserved more time with their Dad oklahoman.com/story/sports/c…
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