Laura McLinn

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Laura McLinn

Laura McLinn

@LauraMclinn

Founding President, Best Day Ever Foundation. Passion for helping patients access treatments. Duchenne mama bear.

Indianapolis, Indiana Katılım Mart 2015
2.5K Takip Edilen936 Takipçiler
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Laura McLinn
Laura McLinn@LauraMclinn·
Peace out, Chicago...our sweet city of hope. It’s been an incredible four year journey. Walking out stronger than we entered… in more ways than one. ❤️
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Elijah Stacy
Elijah Stacy@Elijahjstacy·
I want DMD to have its moment like this. It’d be a great celebration of American greatness and scientific excellence. Awareness of Duchenne would go through the roof. And I want to be there for it!
Rapid Response 47@RapidResponse47

.@POTUS: "FDA has just approved a new drug from Regeneron called Otarmeni, a gene therapy curing a rare disease causing deafness." "Here with us is 2-year-old Travis Smith. He was born deaf... He took this miracle cure and now he can hear his mom, Sierra, say, 'I love you.'" ❤️

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Laura McLinn
Laura McLinn@LauraMclinn·
@repandrecarson Medicaid home and community-based services (HCBS) help people with disabilities stay in their homes, surrounded by the people they love, instead of in institutions. Please #ProtectHCBS
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Laura McLinn
Laura McLinn@LauraMclinn·
@sentoddyoung Medicaid home and community-based services (HCBS) help people with disabilities stay in their homes, surrounded by the people they love, instead of in institutions. Please #ProtectHCBS
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Laura McLinn
Laura McLinn@LauraMclinn·
@repjimbanks Medicaid home and community-based services (HCBS) help people with disabilities stay in their homes, surrounded by the people they love, instead of in institutions. Please #ProtectHCBS
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Laura McLinn
Laura McLinn@LauraMclinn·
@DrMakaryFDA @SecKennedy @POTUS @RonJohnsonWI Please respond to these families who are desperately trying to get your attention just to take a closer look. Let them know that they are heard and that their voices matter, please. This request is perfectly aligned with all of the things that you all speak about so passionately. In the spirit of Right to Try, please just do the next right thing. #ataluren #patientexperience #raredisease #timeismuscle #righttotry
Laura McLinn tweet media
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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Christine Piacentino
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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End Tribalism in Politics
End Tribalism in Politics@EndTribalism·
RFK Jr. gets emotional sharing his thoughts on faith and spirituality. “God talks to us in a whisper.” “The world is clamoring at us with all this loud noise and these shiny things all the time.” “The world is a very noisy place.” “We’re all a combination of both spiritual beings and biological beings.” “God is not going to intrude on our life.” “He's not going to kick down our door.” “He needs to be invited in.” “And that starts with that act of surrender.” @CMLBCKRecovery
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Dr. Marty Makary
Dr. Marty Makary@DrMakaryFDA·
Cell and gene therapy developers shouldn’t have to guess about what safety studies FDA wants to see. Today, FDA issued clear draft guidance that will save developers millions of dollars and years of effort, accelerating treatments to patients. Every effort to move more efficiently here is worth it.
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Christine Piacentino
Christine Piacentino@chrispiaOTM29·
@DrMakaryFDA @FDACDERDirector @SecKennedy @LauraMclinn We wish we could share 20 years of data Time is running out #Ataluren, manufacturing has halted for patients in the US. Wish all #duchenne organizations @PTCBio and the FDA would have an active dialog
mike@mike98572986

$qure $clpt “The FDA and uniQure, along with Huntington’s disease organizations, are in active dialogue regarding how to interpret AMT-130’s data, Margolin added.” It’s a very interesting article, fda in public is now saying that HD technically can work for the plausible mechanism, it’s a big story.

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Keşfet

@DrMakaryFDA @FDACDERDirector @PTCBio @SecKennedy @POTUS @RepAndreCarson @SenToddYoung @RonJohnsonWI