Gretchen Egner

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Gretchen Egner

Gretchen Egner

@gretchenegner

English teacher, Duchenne mom

WI Katılım Haziran 2009
350 Takip Edilen313 Takipçiler
Gretchen Egner retweetledi
TeacherGoals
TeacherGoals@teachergoals·
Which one would you pick? 🖊
TeacherGoals tweet media
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Fatherhood Reforged
Fatherhood Reforged@fathersreforged·
There's a lot of bad publicity with public schools and their current reading and writing at grade level stats. But what nobody is talking about is how on Earth do parents raise kids who can't read and write properly? The whole blaming of public schools for this reveals a terrible parental mindset whereby parenting is expected of the state.
U.S. Department of Education@usedgov

LISTEN: @EDSecMcMahon on why she is returning education to the states ⬇️ “We have failed these generations of our children who cannot read and write.”

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Gretchen Egner
Gretchen Egner@gretchenegner·
@DrMakaryFDA Please help stop-codon #Duchenne patients access #Ataluren @SenRonJohnson @SecKennedy @POTUS #TimeIsMuscle
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 risk losing time/abilities that can’t be regained. #TimeIsMuscle @SecKennedy @POTUS @RonJohnsonWI @SenRonJohnson

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Gretchen Egner
Gretchen Egner@gretchenegner·
@NolteNC "Every day above ground is a great day; remember that." Pitbull--Time of Our Lives
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John Ocasio-Rodham Nolte
John Ocasio-Rodham Nolte@NolteNC·
“Don't cry, young lovers, whatever you do, don't cry because I'm alone.
John Ocasio-Rodham Nolte tweet media
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Robert Pondiscio
Robert Pondiscio@rpondiscio·
As seen on the "Classical Education" page on FB.
Robert Pondiscio tweet media
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Christine Piacentino
Christine Piacentino@chrispiaOTM29·
@DrMakaryFDA @SecKennedy @SenGillibrand @SenRonJohnson @POTUS Please rereview #Ataluren. My son at 32 has taken it for 20 years. His quality of life has been improved. He has defied te odds. Please include patient stories and #realworldevidence. #timeismuscle
Sarah McConnell@menaceduchenne

@DrMakaryFDA please review #Ataluren using #realworldevidence for the treatment of #duchenne. It is SAFE, increasing quality of life & lifespan for those with nonsense mutations. It needs to be commercially available. #timeismuscle #raredisease

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Eitan Fischberger
Eitan Fischberger@EFischberger·
This is a beautiful screw-up because it implicates many people within the NYT. Each story goes through multiple editors, yet not one caught this before publishing. The people who write the news literally know nothing. Stop putting your trust in them
Eitan Fischberger tweet media
Sasha Issenberg@sissenberg

Does the @nytimes know what NATO stands for?

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Reuben Rodriguez
Reuben Rodriguez@ReubenR80027912·
Truly incredible stuff here. This is such an egregious error for the A section of the NYT (not a typo, genuinely not knowing what NATO stands for) that it should lead every piece on the decline in journalism
Sasha Issenberg@sissenberg

Does the @nytimes know what NATO stands for?

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Christine Piacentino
Christine Piacentino@chrispiaOTM29·
@SecKennedy @SenGillibrand @SenRonJohnson @RonJohnsonWI @DrMakaryFDA please ask for #Ataluren NDA back so it can be reviewed again #timeismuscle
Diana Rodriguez@dirod923

Could be our last shipment of #ataluren. If we lived in Brazil, UK or 1 of the other countries where it is approved we would be able to continue on this safe medication @DrMakaryFDA please ask for this NDA back so it can be reviewed again #timeismuscle @SenRonJohnson @SecKennedy

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Diana Rodriguez
Diana Rodriguez@dirod923·
“Rare disease families are not asking for shortcuts. We are asking for fairness. For urgency.” @DrMakaryFDA @SecKennedy @POTUS @SenateAging @SenRonJohnson #ataluren
Christine Piacentino@chrispiaOTM29

@DrMakaryFDA @SecKennedy #raredisease families don’t want to be warriors; we want fairness, urgency, and a drug approval process that values #realworldevidence please rereview #Ataluren Here's a glimpse of my life. issuu.com/kellybreuer/do…

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Christine Piacentino
Christine Piacentino@chrispiaOTM29·
@DrMakaryFDA @SecKennedy @SenGillibrand @SenRonJohnson @POTUS @SenateAging Please review #Ataluren My son's 20 years on drug shows it works. At age 33 he breaths freely, eats solid food, feeds himself. This is not a normal trajectory for #Duchenne
Diana Rodriguez@dirod923

“Rare disease families are not asking for shortcuts. We are asking for fairness. For urgency.” @DrMakaryFDA @SecKennedy @POTUS @SenateAging @SenRonJohnson #ataluren

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Gretchen Egner
Gretchen Egner@gretchenegner·
Beautifully written article. “[R]are disease families are not asking for shortcuts. We are asking for fairness. For urgency.” @DrMakaryFDA @SenRonJohnson @SecKennedy @POTUS #Ataluren
Christine Piacentino@chrispiaOTM29

@DrMakaryFDA @SecKennedy #raredisease families don’t want to be warriors; we want fairness, urgency, and a drug approval process that values #realworldevidence please rereview #Ataluren Here's a glimpse of my life. issuu.com/kellybreuer/do…

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Rod Wong, MD
Rod Wong, MD@docrodwong·
quick chat with the Stat team about rare disease and fda. adam asked what i had to say about those who argue vinay brought rigor back to fda and that patient advocates had too much influence. what i wish i articulated better is what people who have been involved in rare disease trials will tell you is even if u have a cure, u often can't run a gold standard randomized trial to prove it if a disease is too rare, heterogenous, or slow. patient advocacy leaders understand this intimately well and regulators would make better decisions if they listen more to them rather than less.
canoebrookbl@canoebrookbl

Readout LOUD podcast: biotech investors' plea to Trump. ⁦@docrodwong⁩ thanks Rod for speaking up on behalf of the rare disease community! statnews.com/2026/04/02/rea…

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Christine Piacentino
Christine Piacentino@chrispiaOTM29·
@DrMakaryFDA @SecKennedy @SenGillibrand @SenRonJohnson @POTUS please rereview #Ataluren with #realworldevidence 20 years in trial without it he wouldn't be a college grad with Biology BS minors in TOX CHEM, Eagle Scout. 32 and breathing freely. #timeismuscle
Laura McLinn@LauraMclinn

WOW - These stories are so powerful. @DrMakaryFDA, @SecKennedy, @POTUS please hear their stories and please help them maintain access to #ataluren by reviewing it again and take the #realworldevidence into account. Patients can access this in other countries but no longer here in the United States of America. That is unfathomable. Let's do better. #timeismuscle #duchenne @RonJohnsonWI

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Keşfet

@DrMakaryFDA @SenRonJohnson @SecKennedy @POTUS @NolteNC @SenGillibrand @RonJohnsonWI @SenateAging