nill

Intresserad av hälsa

[nill @nillguse]

#Als #Sverige #worldcup2026 @realDonaldTrump

[Rain Consulting Group @RainConsulting]

In all seriousness there are some good ideas behind this but we need to just scrap it at this point and start over with an adaptive approval framework. It’ll ultimately get us to where we need to be, faster. It’s also much more humane, puts patients first and modernizes are system so we can once again become the leader in innovation and medicine.

An adaptive approval framework fixes RTT, and the voucher program while prioritizing therapies for terminal diseases so patients don’t die waiting. @houmanhemmati

I’m hoping you have already started on this @FDA_KyleD, and hit me up anytime to get the wheels spinning. @realDonaldTrump @JDVance @DrOz @SecKennedy @aVoice4ALS

[nill @nillguse]

avskaffa #ntrådet alla sjuka ska ha en möjlighet att få behandling även #Als #sjuka @kdriks @BuschEbba @regionstockholm @socialstyrelsen

[Shah Minokadeh, M.D. @MinoShah]

I wish @FDACBER agreed

#ALS is 100% fatal SINCE 1869, yet patients are denied effective NurOwn. Dying advocates spent our final days compiling survival data for a Citizens' Petition. The FDA is now >160 days past its own deadline. @SecKennedy @FDA_KyleD @SenRonJohnson @PeterPitts

The FDA ignored the real-world evidence, but the NurOwn Citizen's Petition proves why #ALS patients are fighting so hard. The Expanded Access Program (EAP) data showed:

• 100% 5-year survival (vs 10-20% naturally)
• 6.8-year median survival (vs 2-5 years)
• Up to 85% slowing of disease progression
• Progression-free periods lasting up to 17 months

ALS is 100% fatal. When a treatment shows numbers like this, the FDA has a moral obligation to act

@realDonaldTrump @RepGuthrie @houmanhemmati @DrOz @DrOzCMS @ChuckGrassley @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @LeaderJohnThune @BellinaDeb @RobertKennedyJr @RepMMM @SenatorWicker @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @RepDianaDeGette @RepMikeQuigley @RepSchakowsky @rosadelauro @RandPaul @RepDonBacon @SenJohnCurtis @GovBraun @SenatorCollins

[nill @nillguse]

@elonmusk @elonmusk please help to find a cure for Als🙏🏼❤️

[nill @nillguse]

@elonmusk Please do something to find a cure for als, l know you can do it @elonmusk

[nill @nillguse]

I Storbritannien får #ALSpatienter som rugbyprofilen Lewis Moody testa flera olika potentiella bromsmediciner samtidigt genom smartasamordnade studier så kallade plattformsstudierMND-SMART I #Sverige lämnas man helt utan en chans attens få försöka kämpa. #sverigesvård @socialdep

[nill @nillguse]

England testar man flera ALSmediciner samtidigt via smarta forskningsplattformar I Sverige stoppas vi av stel byråkrati och för få studier Varför får inte svenska patienter samma chans att överleva Vi kräver en snabbfil NU @AckoAnkarberg @KarolinskaUnsju @NeuroSverige #als #svpol

[nill @nillguse]

@drildiz Covid asilari nörolojik hastaliklari da cogaltti , özellikle cok genc Als teshisi aliyor artil. Peki cözum ne? Artik olan olmus mrna yi vucudumuzdan atmak icin yapabilecegimiz bir sey olmali?

[nill @nillguse]

Sverige ska vara en forskningsnation ändå nekas ALS patienter livsviktiga studier @AckoAnkarberg när tänker ni göra det lättare för läkemedelsbolag att satsa i Sverige
@socialdep @NeuroSverige @HockeyXml #als #aslsverige #hälsovård @MByden @regionstockholm #börjesalmingstiftelse

[nill @nillguse]

Varför har svenska #ALS patienter sämre chans att överleva än brittiska I England får #rugbyprofiler som #LewisMoody testa nya #mediciner medan #svenskapatienter lämnas att dö i byråkrati Vi behöver fler kliniska #studier i Sverige #alssverige #forskning @socialdep @neurosweden

[nill @nillguse]

#als sjuka behöver behandling #nurown hjälper als sjuka, de har ingen #livskvalitet #dör i väntan på #behandling @CarolineIngre @sallsynt @SKR_se @regionstockholm @vgregion #ntrådet @neurosweden #sverigessjukvård #neurodegneration @kdriks @socialdep @IsaLann1 @SwedishPM

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

@pjgreen did a lot of amazing ALS advocacy including leading the efforts wth the Haberstrohs & BWayne to get @MLB to recognize #LouGehrigDay today June 2nd. Thanks to the @Dodgers for honoring Phil's advocacy. Sadly this is the first year that Phil won't be with us to raise awareness on Lou Gehrig Day. He deserved more time with his family.

Phil lived over 7 years with ALS because of a #stemcell therapy called NurOwn. In 2021, when he made this post, Phil was amidst his EAP dosing of #NurOwn & it helped him regain some function. He told @FDACBER about his amazing results in the Oct 2021 PFDD meeting & at the 2023 AdComm where he reminded the FDA about his Real World Evidence. Phil said his "Me-value" should matter as much as p-values. NurOwn helped Phil live longer & live better. But he died waiting when the FDA didn't believe him.

As Phil said: "we need @US_FDA to put on their common sense hat... People's lives are at stake."

#LouGehrig #BaseballisBest #NurOwnWorks #LG4Day

@SlangsOnSports @tomhaberstroh @Kurkjian_ESPN
@PeterPitts @MLBNetwork @MLBNetworkRadio @MLBONFOX @MLBTheShow @barstoolsports @LiveLikeLou4 @LG4Day @stevens_nation @iamalsorg @EveryLifeOrg @sepiscotty @mp21mike @HopOnACure @youralsnetwork @NicholasWarack
@joerogan @TheHerd @jimrome @TheLeadoffSpot @MLBNow @_MLBCentral_ @IntentionalTalk @Espngreeny @ESPN @DaniWex @Xavier_Scruggs @markdero7 @SarahNauser @iamalsorg @GeorgeHBrett @fredcouplesgolf @biospace

@POTUS @realDonaldTrump @FDA_KyleD @FDACommissioner @SecKennedy @KenCalvert

[nill @nillguse]

@elonmusk 🙏🏼💙

[nill @nillguse]

Please find a #cure #als is the worst #disase @DrOzdinler @DonaldTrump @DrOz @socialstyrelsen @LV_MPA #ntrådet @neurosweden @drmemisoglu https://t.co/x61s75AQYE

[nill @nillguse]

#Als merkezleri acilacakti, bir gelisme varmi? Ne olur bir an önce bir seyler yapin, hastalar bir umut bekliyor. @saglikbakanligi @drmemisoglu @alsmnhturkiye @RTErdogan @DrOzdinler https://t.co/2ujU0o48LD

[nill @nillguse]

@drmemisoglu @saglikbakanligi Sayin bakanim, als nin ilaci nezaman cikacak, ne olur ulkemiz olarak butce ayirin biran lnce tedavi edilir kronik bir rahatsizliga dönusdun. Als bildigim en kötu hastalik Rabbim trz zamanda birileri vesilesiyle sifa versin tum hastalara. Ne olur vesile olun

[nill @nillguse]

@drmemisoglu @saglikbakanligi Sayin bakanim Als hastlarina tedavi ne zaman cikacak, calismalar hangi seviyede? Ne olur artik birseyler yapin

[nill @nillguse]

@kabatasserdar Hocam als de kök hucre tedavisi yardimci olurmu?

[nill @nillguse]

@KennyCarmody Do you have Als, did Emg show something?

[nill @nillguse]

@FlyingLasagne @drtaubraun Anything for als?

[nill @nillguse]

@ROKeefeMD What does mithocondrial myopathy show in a muscle biopsy?

[nill @nillguse]

@DrOz @RobSchneider Please Dr Mehmet öz do something to finding treatment for als, please hurry on.