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Nancy Fischer
@FischNancy
New Jersey, USA
Joined March 2013
113 Following
45 Followers
74 Posts
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
@FDA_KyleD @FDACDERDirector
@SecKennedy @POTUS @RonJohnsonWI @SenRonJohnson Please help us and signal to @PTCBio that FDA will weigh #RealWorldEvidence and apply consistent standards across CDER/CBER when reviewing #Ataluren for stop-codon #Duchenne. Real-world outcomes truly matter. Our sons with a nonsense mutation are not eligible for exon-skipping; my son has been in Ataluren trials/extension since 2006 with no side effects. He lost ambulation at 22 (2015) and, at 32, has avoided typical pulmonary decline with 97% pulmonary scores. 90 day supply recieved 6/1. March 2026 we were notified that there was only a 6 month suppY. Clock is ticking. #RareDisease families can't risk losing time/abilities that can’t be regained. #TimeIsMuscle
Who to follow
chris mills rodrigo
@millsrodrigo
editor @inequalityorg
Dystrogen Therapeutics
@dystrogen
Dystrogen Therapeutics is a clinical stage, chimeric cell therapy company focusing on muscle wasting diseases. Founded by @ClevelandClinic alum @siemionowkris
Chris Larsin 
@ChrisLarsin
The Washington Company |
Alpha Horizon Fund Management
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
@FDA_KyleD @FDACDERDirector
@SecKennedy @POTUS @RonJohnsonWI @SenRonJohnson Please help us and signal to @PTCBio that FDA will weigh #RealWorldEvidence and apply consistent standards across CDER/CBER when reviewing #Ataluren for stop-codon #Duchenne. Real-world outcomes truly matter: a 13-year-old running; a 34-year-old maintaining breathing function. Our sons with a nonsense mutation are not eligible for exon-skipping; my son has been in Ataluren trials/extension since 2006 with no side effects. He lost ambulation at 22 (2015) and, at 32, has avoided typical pulmonary decline with 97% pulmonary scores. #RareDisease families can't risk losing time/abilities that can’t be regained. #TimeIsMuscle
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
Posting everyday until @FDACommissioner @FDACDERDirector signals @PTCBio to say #realworldevidence will be used for #ataluren approval This is what 9 years on Ataluren looks like, this is not the natural history for a 13 yr old with #duchenne #timeismuscle @SecKennedy @POTUS
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