Top Tweets for #ALSHearing
At #ALSHearing before @EnergyCommerce, Congress asked how it could help advance #ALS research?
Make #ALS mandatorily reported & offer exome sequencing to everyone & their family members!
This would be a treasure trove to researchers.
@RepAnnaEshoo @cathymcmorris @CDCDirector
On average, it takes 6 molecular steps for someone to develop #ALS #MND. In this #openaccess paper we show that a single gene mutation can account for up to 4 of them, leaving only 2 steps to be caused by aging or the environment. https://t.co/KpQIE9Et3O
Thx @GKButterfield for evidence from Dr. Bedlack at Duke that most of his 3k patients w #ALS have no access to trials.
Phase4 trials & #EAPs are always better than #DallasBuyersClub. Help us get #NurOwn to a P4 trial!
#NurOwnWorks
#ExpandedAccess #DyingWaiting #ALSHearing
Thx @DorisMatsui for drafting legislation re #PatientReportedOutcomes & thx Christina for listening to #NurOwn testimonials. We must codify what FDA believes is discretionary in 2019 Guidance. #ALS world will advocate for patient voices!
#NurOwnWorks #LivingProof #ALSHearing
Thank you to all the #pALS & #cALS that fought their ass off to make this #ALShearing come to fruition! A special thanks to @bsw5020 & @sabrevaya for always leading the charge! Much Love! Let’s keep our foot on the gas and #EndALS @iamalsorg @als_now
.@janschakowsky asks about that glimmer of hope that is still out of reach.Who has actually benefited from Guidance? Wants names. @FDACDERDirector expresses sympathy. No names. Rep wants a number. No number. #ALShearing
.@DorisMatsui on now. She is citing her legislation for patient experience data. She asks about FDA use of patient experiencce data for neurodegentative diseases. #ALShearing
.@RepFredUpton on now. Asks FDA how we help them do their job better. How do we get them to approve cures earlier. #FDAhearing He does recognize that ALS community is frustrated. #ALShearing egads.
My biggest fear is that my 12 y/o daughter & 10 y/o son will be asking the same question in the near future! @SenSherrodBrown @robportman @boblatta @SpeakerPelosi @Jim_Jordan @WarrenDavidson #EndALS #DrugsInBodies #ALShearing #July29
A dad passed away from ALS yesterday morning. He fought his fight and he fought it hard. Why didn’t you help him fight @US_FDA @DrWoodcockFDA @alsassociation ?? @FrankPallone @SenSherrodBrown @senrobportman please help us get the FDA to understand we need #DrugsInBodies NOW!
More promises to exercise regulatory flexibility yet #NurOwn worked on "some" but FDA says not "enough"
People w #ALS are #DyingWaiting while FDA "listens"
We need action. We need an #ALSHearing
@RepAnnaEshoo @cathymcmorris @SenatorBurr
@RepJasonCrow @RepBrianFitz @SecBecerra
If you wonder what the next tragedy will be in ALS if we don't get an #ALShearing & pass the #ACTforALS and #PromisingPathwayAct, it's easy to predict.
@MGHNeurology platform trial will show significant survival benefit from treatments, but #FDA will say more data is needed.
Josh stabilized on #NurOwn in P3 & again in #ExpandedAccess.
Need #ALSHearing so you can hear from Josh & his neuro Dr Bob Brown of UMass who saw "dramatic response" in "some" in trial.
#LivingProof
@SenWarren @SenMarkey @RepLoriTrahan
@SenBooker @RepAnnaEshoo @rosadelauro
My now 32 yr old son Josh was a participant in the Nurown P III trial.
Diagnosed 3/15/19 w/Alsfrs (40)
3rd injection 1/20/20 (41)
4th through EAP (37), 5th 6/2/21 (37) He only progressed while NOT receiving Nurown #LivingProof, #NurOwnWorks @US_FDA @DrWoodcockFDA
@Mayuri_Saxena People like NY's @Mayuri_Saxena deserve a chance to eat birthday cake again
#ALSHearing #NurOwn
@SenSchumer @GraceMeng @SenGillibrand @RepKathleenRice @RepPaulTonko @RepAnnaEshoo @FrankPallone @cathymcmorris @brettguthrie @RepBera @RepJayapal @RepJasonCrow @RepBrianFitz @FLOTUS
@statnews @Michell62614519 22mnths w #ALS: Tony 29
*bench press 255, now CANT PRESS HIMSELF OFF THE FLOOR WHEN HE FALLS
*30 pullups in a row, NOW CANT PULL HIS OWN PANTS UP
*deadlift 445, NOW CANT LIFT HIS NEW BABY GIRL.
@FDA APPROVE #NUROWN
#DyingWaiting #DrugsInBodies #ALShearing #FDARedtape
People w #ALS need a Congressional #ALSHearing.
Let Congress hear testimony from people in #NurOwn trial & their world renowned neurologists who believe #NurOwnWorks.
@RepJasonCrow @RepBrianFitz @RepAnnaEshoo @rosadelauro @SecBecerra @SenCapito @Sen_JoeManchin @cathymcmorris
People in #NurOwn trial like @MuggliRoberto @ThurmanTough & Navy pilot Matt Bellina can testify about regaining function on @BrainstormCell's NurOwn.
#ALSHearing
@RepJasonCrow @RepBrianFitz
@rosadelauro @RepAnnaEshoo @brettguthrie
@Sen_JoeManchin @PattyMurray @SenBillCassidy
MAYO Neuro & researcher saw #Nurown work
Windebank can testify at #ALSHearing w @EnergyCommerce
@RepAnnaEshoo @cathymcmorris @RepJasonCrow @RepBrianFitz @KenCalvert @rosadelauro @brettguthrie @RepKimSchrier @RepBera @DrNealDunnFL2 @RepRaulRuizMD @DrBurgessTX
@RepJohnJoyce #ALS
💜⚾️BIG THANK YOU @Rockies, @MLB && my friends and family for #LouGehrigDay⚡️
#EndALS #DrugsInBodies #ALShearing #ALSAwareness @iamalsorg @als_now
Thx to @MLB for the inaugural #LouGehrigDay!
Mayuri shows the same courage & tenacity today as Gehrig showed back in 1939. Now we need to get her access to promising drugs stuck in #ALS trials!
#ALSHearing
@SenSchumer @SenGillibrand @RepGraceMeng @rosadelauro @RepAnnaEshoo
Thank you @MLB for announcing today as Lou Gehrig Day! @iamalsorg @Yankees @AaronBoone @SenSchumer @gillibrandny @LG4Day #ALS #LouGehrigDay
Many children w #ALS in study are of African descent. POC underrepresented in research & overrepresented in enviro injustice associated w ALS
Need #ALSHearing
@RepKarenBass @RepBeatty @ClyburnSC06 @RepBobbyRush @RepRobinKelly @RepTerriSewell @RepLBR
https://t.co/w9GzxwJc7e
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