#eapnow - Twitter Hashtag

@WSJopinion If Biogen delays #Tofersen until July, Lisa may be dead or on a trach & unable to get the drug. Lisa's #Bulbar #ALS & mutation are rapidly progressing. It's worse than Stage 4 #cancer dx. Did someone forget the last word in Biogen's slogan of Science Meets Humanity? #EAPNow

aVoice4ALS's tweet photo. @WSJopinion If Biogen delays #Tofersen until July, Lisa may be dead or on a trach & unable to get the drug. Lisa's #Bulbar #ALS & mutation are rapidly progressing. It's worse than Stage 4 #cancer dx.

Did someone forget the last word in Biogen's slogan of Science Meets Humanity?

#EAPNow https://t.co/KjgA5vM22p

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

@Barbie_Ken100 Sadly it's Biogen's attempt at PR spin to quiet the attacks on social media. Many people w rapidly progressing #ALS will be dead or on a trach and likely unable to get #Tofersen in July. Huge question if they will meet .05 p-value in Sept. No reason they can't offer #EAPNow

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

#BlistersandTears ... #ThisisALS When will people without #ALS start showing one iota of compassion for people with ALS? #Biogen denied @Mayuri_Saxena access to #Tofersen 5x -- when she could still move & scream #DrugsinBodies #EAPNow #BiogenBull

Sadhvi Mayuri Om

@Mayuri_Saxena

over 5 years ago

Imagine you can't move. Imagine you can't speak. Imagine not being able to scream for help when no one checked the temperature of the boiling hot water your hand was placed in. All you are left with is blisters and tears #ALS @US_FDA

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

👇🏽Exactly! "Fast means Fast" Every day = thousands more motor neurons die! The only "safety" issues are the number of people with #SOD1 mutation who are going to die or progress so quickly that they won't be able to get Tofersen in July or the Fall. #DrugsinBodies #EAPNow

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

4/ Several small pharmas in #ALS #Healey Platform trial are offering EAP in a P2/P3 trial. This EAP trial was designed by Merit Cudkowicz who was just inducted into the National Academy of Medicine If small pharma can offer it without harming their trial, so can Biogen #EAPNow

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

3/ People in placebo won't drop out of the trial. The law PROHIBITS someone who qualifies for the trial from getting EAP. Why would someone drop out of trial with 5 yrs of OLE to the drug when they can't qualify for the EAP? #MoreBioethicistLies #DrugsinBodies #EAPNow

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

1/ Most people alive TODAY w rapidly progressing #ALS won't be alive by mid-summer or will be on trachs -- which will disqualify them for the EAP. #CompassionateUse requires compassion. #DrugsinBodies #EAPNow

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

500 Lives vs Biogen's $41 Billion Market Cap People with #ALS are #DyingWaiting for #DrugsinBodies. Wonder what Biogen's institutional investors think? #Vanguard, #Blackrock #RenaissanceTechnologies & #PrimeCapMgmt #BiogenGrantAccess #EAPNow @Chance4Lisa @als_now

Lisa's Legacy for ALS @LisaLegacy4ALS

over 5 years ago

🚨We need your help.🚨 @biogen's dragging its feet on granting Expanded Access for Lisa and others with fast-progressing #ALS. Urgently email them at [email protected] and [email protected]. #DrugsInBodies #ItsTime #BiogenGrantAccess

LisaLegacy4ALS's tweet photo. 🚨We need your help.🚨 @biogen's dragging its feet on granting Expanded Access for Lisa and others with fast-progressing #ALS. Urgently email them at public.affairs@biogen.com and IR@biogen.com. #DrugsInBodies #ItsTime #BiogenGrantAccess https://t.co/yJ4dFswTbt

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

When a Board member of a national PATIENT ADVOCACY organization attacks #ALS PATIENTS fighting for their lives & defends companies who aren't, it makes me question their priorities. #Biogen's donations vs Patients fighting for #Tofersen? #DrugsinBodies #DyingWaiting #EAPNow

Lisa's Legacy for ALS @LisaLegacy4ALS

over 5 years ago

Last night on Twitter, an @alsassociation board member asked some questions about Team Lisa's efforts. Thank you, John Robinson, @CWOB_Ancient, for bringing #ALSA into this important conversation. Please see our message to @alsassociation. Let's chat. #tofersen4lisa

LisaLegacy4ALS's tweet photo. Last night on Twitter, an @alsassociation board member asked some questions about Team Lisa's efforts. Thank you, John Robinson, @CWOB_Ancient, for bringing #ALSA into this important conversation. Please see our message to @alsassociation. Let's chat. #tofersen4lisa https://t.co/3XHy954MSo

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

2 yrs & 4 requests to Biogen to get access #Tofersen ... all denied. Mayuri deserves a chance to halt the harm from SOD1 gene. @US_FDA & @Biogen Mayuri is a warrior. Please give her access to a #MedicalArsenal to fight #ALS #DrugsinBodies #ACT4ALS #EAPNow #CompassionateUse

Sadhvi Mayuri Om

@Mayuri_Saxena

over 5 years ago

Two years ago, I remember taking off my bipap and my lungs didn't expand themselves. I should've died the Spring of 2019, but here I am 2 years later on life support... Ready to kick a$$ #ALS #ACT4ALS

Mayuri_Saxena's tweet photo. Two years ago, I remember taking off my bipap and my lungs didn't expand themselves. I should've died the Spring of 2019, but here I am 2 years later on life support... Ready to kick a$$ #ALS #ACT4ALS https://t.co/cJUfFs94sr

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@aVoice4ALS

over 5 years ago

Great excerpt from the article talking about the drug manufacturer's support for #ExpandedAccess aka "parallel track" to get #DrugsinBodies @bmsnews stepped up for people #DyingWaiting @Biogen if they can do it, so can you @Chance4Lisa @Mayuri_Saxena @bsw5020 #tofersen #EAPNow

aVoice4ALS's tweet photo. Great excerpt from the article talking about the drug manufacturer's support for #ExpandedAccess aka "parallel track" to get #DrugsinBodies

@bmsnews stepped up for people #DyingWaiting
@Biogen if they can do it, so can you

@Chance4Lisa @Mayuri_Saxena @bsw5020
#tofersen #EAPNow https://t.co/lQWheZDnHc

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

Silence is Complicity ~ Wisdom from Albert Einstein #DrugsinBodies #DyingWaiting #EAPNow #ExpandedAccess #CompassionateUse #HumanityMeetsScience

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

Reason for Hope from one of the world's top ALS researchers. Reason to increase #ExpandedAccess programs now as people today cannot wait a few more years to get #DrugsinBodies #CompassionateUse #EAPNow #DyingWaiting @Chance4Lisa #Tofersen @Mayuri_Saxena

aVoice4ALS's tweet photo. Reason for Hope from one of the world's top ALS researchers.

Reason to increase #ExpandedAccess programs now as people today cannot wait a few more years to get #DrugsinBodies

#CompassionateUse #EAPNow #DyingWaiting
@Chance4Lisa #Tofersen @Mayuri_Saxena https://t.co/gOX5wT1lwa

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Sherry Quisenberry @sherryquis

over 5 years ago

We appreciate you @gregggonsalves ❤️ Our #ALS tribe pleads for urgency to save lives but we are ignored and rejected. The apathy is killing us. @biogen @POTUS #DrugsinBodies #eapnow #tofersen4lisa #dyingwaiting #fighting4lisa #LeadersLead

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

Four times Biogen has denied 36 year old Mayuri's #ExpandedAccess request for #Tofersen. With each denial, her #ALS progressed more. @Biogen's slogan is #ScienceMeetsHumanity. Where was the humanity in these denials? #DrugsinBodies #EAPNow #CompassionateUse @gregggonsalves

Sadhvi Mayuri Om

@Mayuri_Saxena

over 5 years ago

A neurologist from my original ALS team didn't take my request for a genetics test seriously enough. No family history but by the time I switched to a new #ALS clinic and got tested, it was too late to qualify for #tofersen trial despite having a SOD1 mutation. Now look at me.

Mayuri_Saxena's tweet photo. A neurologist from my original ALS team didn't take my request for a genetics test seriously enough. No family history but by the time I switched to a new #ALS clinic and got tested, it was too late to qualify for #tofersen trial despite having a SOD1 mutation. Now look at me. https://t.co/4LIDpXyCMM

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@aVoice4ALS

over 5 years ago

Grateful for esteemed voices to join us in this battle for #ExpandedAccess. @gregggonsalves is a professor of both Law & Epidemiology at Yale. His leadership & advocacy is so incredibly important! #LeadersLead #DrugsinBodies #DyingWaiting #HumanityMeetsScience #EAPNow #ALS

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AZ Latina ☮️🌊🟦

@aVoice4ALS

over 5 years ago

Bravo! Thank you @gregggonsalves for your leadership on this issue! Massive gratitude for you setting the record straight that EAPs don't hurt patients of tomorrow or jeopardize trials. People with #ALS need more voices like yours! #DrugsinBodies #DyingWaiting #EAPNow

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@aVoice4ALS

over 5 years ago

@MinoSean @alsassociation @Lance4good @chrisbluemle @LynnAaronson1 @KSheehanHeart @GoSueGo @slk1 @StuartObermann @AbeBiel @NancyLeaMond @fred_degrandis @momfrates @ALSMNDAlliance @kemenkhaus @Dave_Shore @CharityNav pALS dont care what you own as long as you fight for their lives TODAY People are #DyingWaiting for access to trial drugs & ALSA is bankrolling $70M of #IceBucket $ #pALS raised #IceBucketChallenge $ - not ALSA pALS should get a voice in how it's spent! #IceBucketFail #EAPNow

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