SOS 4 ALS

My son, Josh is #livingproof that #Nurown works. His breathing improved significantly!! He is 33 years old, 5 years since onset of #ALS.

.@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

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.

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. #NoAdComNoVoice ALS=broken bodies + no Big Pharma allies. DYING ALS NOW & FUTURE DIAGNOSED NEED CONGRESS. ALS IS NOT RARE. You or your loved one could be next. @RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepMMM @JayObernolte @cathymcmorris @RepRaulRuizMD @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @BillCassidy @RandPaul @SenatorCollins @SenMullin @lisamurkowski @SenatorBraun @SenatorRomney @PattyMurray @RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepScottPeters @BernieSanders

Before 2019 Guidance Doc, @US_FDA promised #ALS community "small changes" would justify approval Changes on #NurOwn? ☑ Standing out of wheelchair ☑ Breathing w/o bipap ☑ Swallowing food ☑ Walking 7 miles ☑ Operating your wheelchair ☑ Holding your penis ☑ Halting paralysis

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.