Diana Rodriguez

just a mom doing her part to End Duchenne. the rest of the time empowering her students as an ELA Teacher.

[Christine Piacentino @chrispiaOTM29]

@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

[Diana Rodriguez @dirod923]

One of the must do’s during our vacation was to visit the Rocky Statue, the fact that it was moved from the base of the steps to the top did not stop my 13 yr old son with DMD from getting his picture taken! Leaving his wheelchair behind at the base he climbed the steps with just as much perseverance, determination, and underdog spirit as Rocky @TheSlyStallone did! It is also proof
that Ataluren works, we have a few months of meditation left before our access is gone, while patients in other countries will continue to have access to this safe medication. @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 mutations are not eligible for exon-skipping; and because of adverse events by son does not qualify for gene therapy. He along with many others need to keep their Ataluren access.

[Nancy Fischer @FischNancy]

Posting everyday until
@FDA_KyleD @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

[Christine Piacentino @chrispiaOTM29]

@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

[Christine Piacentino @chrispiaOTM29]

@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

[Nancy Fischer @FischNancy]

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

[Nancy Fischer @FischNancy]

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

[Nancy Fischer @FischNancy]

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

[Nancy Fischer @FischNancy]

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

[Diana Rodriguez @dirod923]

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

[Diana Rodriguez @dirod923]

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

[Diana Rodriguez @dirod923]

Day 56
Posting everyday until @DrMakaryFDA @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

[Diana Rodriguez @dirod923]

Day 55
Posting everyday until @DrMakaryFDA @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

[Nancy Fischer @FischNancy]

Posting everyday until @DrMakaryFDA @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

[Diana Rodriguez @dirod923]

Day 54
Posting everyday until @DrMakaryFDA @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

[Nancy Fischer @FischNancy]

Posting everyday until @DrMakaryFDA @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

[Christine Piacentino @chrispiaOTM29]

@DrMakaryFDA @FDACDERDirector:  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 @SecKennedy @POTUS @RonJohnsonWI @SenRonJohnson

[Laura McLinn @LauraMclinn]

Dr. Makary - Please respond to these families who are losing access to this medication here in the US after TWENTY YEARS!! This is a very safe, effective, small molecule, that patients can access in other countries, but no longer here in our own country. @DrMakaryFDA @RonJohnsonWI @POTUS @SecKennedy @dirod923 @chrispiaOTM29

[Diana Rodriguez @dirod923]

Day 53
Posting everyday until @DrMakaryFDA @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

[Diana Rodriguez @dirod923]

Day 52
Posting everyday until @DrMakaryFDA @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