Top Tweets for #NoMoreALSWidows

about 5 years ago

. @Chance4Lisa @Biogen responded to my letter pleading for #tofresen through #expandedaccess. I spoke #truth to #power. July is too late. More Excuses. We need action. #nomoredead #drugsinbodies @FDA #Redtape #nomoreALSWidows

nicolecimbura's tweet photo. . @Chance4Lisa @Biogen responded to my letter pleading for #tofresen through #expandedaccess. I spoke #truth to #power. July is too late. More Excuses. We need action. #nomoredead #drugsinbodies @FDA #Redtape #nomoreALSWidows https://t.co/FoAdyRMYDf

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Wall Street Journal Opinion @WSJopinion

about 5 years ago

Tomorrow at 10 am EST @alsassociation is hosting a meeting with @US_FDA. Read my @WSJopinion prior to listening in. It’s time for action and an#ALS revolution. #nomoredead #nomoreALSWidows #FDAredtape #ALSAwarenessmonth. https://t.co/wlRumLf6Ia

over 5 years ago

My husband and I fought for continued access to treatment and to improve an archaic regulatory pathway. He died waiting for change, writes Nicole Cimbura https://t.co/B14i1ygMvS

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about 5 years ago

. @Biogen I wrote a 2nd letter to #CEO asking for #Expandedaccess for @Chance4Lisa. I deserve a response. #NoMoredead #nomorealswidows #nomoreredtape

nicolecimbura's tweet photo. . @Biogen I wrote a 2nd letter to #CEO asking for #Expandedaccess for @Chance4Lisa. I deserve a response. #NoMoredead #nomorealswidows #nomoreredtape https://t.co/eEKhaW5Qeq

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over 5 years ago

@WSJopinion People with #ALS have marched & protested. FDA doesn't listen to people #DyingWaiting for #DrugsinBodies. #FDARedTape is killing 6k people a yr. #ALSAwarenessMonth #NoMoreALSWidows

aVoice4ALS's tweet photo. @WSJopinion People with #ALS have marched & protested.
FDA doesn't listen to people #DyingWaiting for #DrugsinBodies. #FDARedTape is killing 6k people a yr.

#ALSAwarenessMonth #NoMoreALSWidows https://t.co/ST9GXUJM6J

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over 5 years ago

@shellymckenna @WSJ Thanks for sharing this. All our stories are tragic and it’s time for a change in the #ALS status quo. #nomoreALSwidows

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Wall Street Journal Opinion @WSJopinion

over 5 years ago

@WSJopinion Giving people access to drugs in clinical trials is the perfect marriage of the Humanity of Right to Try with the Science of the FDA. FDA gets Data. People get Hope. Now we need Congress & FDA to act with URGENCY! #DrugsinBodies #DyingWaiting #NoMoreALSWidows

over 5 years ago

My husband and I fought for continued access to treatment and to improve an archaic regulatory pathway. He died waiting for change, writes Nicole Cimbura https://t.co/w1lklYHptl

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over 5 years ago

#NoMoreALSWidows #NoMoreALSOrphans @nicolecimbura you are a beautiful, courageous force of nature! Love you for staying in this fight so other children don't lose their parents to #ALS. People are #DyingWaiting for #Tofersen #HumanityMeetsScience #ALSUrgency #DrugsinBodies

Lisa's Legacy for ALS @LisaLegacy4ALS

over 5 years ago

@Chance4Lisa @biogen @Mayuri_Saxena @iamalsorg @als_now @Michell62614519 @FinishALS @BrianBeatsALS @sandymorris333 @pjgreen @up_als @PatriciaManhar1 . @biogen I wrote a letter to #CEO Michel Vounatsos asking him to take the next step and grant Lisa access to #tofresen now. July is too late! #NomoreALSwidows

nicolecimbura's tweet photo. @Chance4Lisa @biogen @Mayuri_Saxena @iamalsorg @als_now @Michell62614519 @FinishALS @BrianBeatsALS @sandymorris333 @pjgreen @up_als @PatriciaManhar1 . @biogen I wrote a letter to #CEO Michel Vounatsos asking him to take the next step and grant Lisa access to #tofresen now. July is too late! #NomoreALSwidows https://t.co/GqhOCNVvju

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over 5 years ago

Thank you @nicolecimbura for using your voice! #ALS community - can you do the same? Let's do what we can to help Lisa!! Pls write emails to [email protected], [email protected] and [email protected]. Open the floodgates. #NoMoreALSwidows #tofersen4lisa #dyingwaiting

over 5 years ago

@Chance4Lisa @biogen @Mayuri_Saxena @iamalsorg @als_now @Michell62614519 @FinishALS @BrianBeatsALS @sandymorris333 @pjgreen @up_als @PatriciaManhar1 . @biogen I wrote a letter to #CEO Michel Vounatsos asking him to take the next step and grant Lisa access to #tofresen now. July is too late! #NomoreALSwidows

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over 5 years ago

@JeffFortenberry @US_FDA Thank you for being an #ALS Champion. In addition to to Mike, @No_Quarter_Dad, @BryanWayneMusic, @PaustDeb, @jodonnellames, @nadia_sethi, @mdemaria2017, @MommaJillB, @jenniferA86 fight in the memory of your brother in law, Joe Gregory #nomoreALSwidows

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over 5 years ago

@Chance4Lisa @biogen @Mayuri_Saxena @iamalsorg @als_now @Michell62614519 @FinishALS @BrianBeatsALS @sandymorris333 @pjgreen @up_als @PatriciaManhar1 . @biogen I wrote a letter to #CEO Michel Vounatsos asking him to take the next step and grant Lisa access to #tofresen now. July is too late! #NomoreALSwidows

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Barbie_Ken100 @Barbie_Ken100

over 5 years ago

@SuMoh7 @DemsWork4USA @RepLucyMcBath honored her constituents fighting for their lives when she supported the #ACT4ALS last session. She is an #ALSHero #GA06 #Georgia @SuMoh7 #NoMoreALSWidows #DyingWaiting https://t.co/muFNMO0Avm

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over 5 years ago

#NoMoreALSWidows

over 5 years ago

@PattyMurray WA's water is one suspected source of 100% fatal & paralyzing #ALS. 90% of #ALS is sporadic, caused by various enviro exposures regulated by @EPA. Help people #DyingWaiting get access to investigational drugs to fight for their lives. #NoMoreALSWidows https://t.co/NZHxVQvlU2

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Wall Street Journal Opinion @WSJopinion

over 5 years ago

Thx @WSJopinion for sharing the story of #ALSWidow @nicolecimbura How many lives will be sacrificed in the name of science bc the #FDA refuses to honor its promise to "Exercise Regulatory Flexibility" for #ALS, a 100% fatal disease? #DyingWaiting #NoMoreALSWidows @WSJhealth

over 5 years ago

My husband and I fought for continued access to treatment and to improve an archaic regulatory pathway. He died waiting for change, writes Nicole Cimbura https://t.co/w1lklYHptl

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over 5 years ago

@SenatorSinema Thx @SenatorSinema for being a champion for #Veterans fighting 100% fatal & paralyzing #ALS. Will you help us get a Congressional hearing to talk about how the FDA isn't honoring its promise to people fighting ALS? #NoMoreALSWidows #DyingWaiting https://t.co/NZHxVQvlU2

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over 5 years ago

@RepUnderwood Incidence of suicide in people w 100% fatal & paralyzing #ALS is 7x higher than the national average. Veterans prevalence of ALS is 10x ⬆ for tactical ops like pilots. Will you support #ACT4ALS when reintroduced & help us ensure #NoMoreALSWidows? https://t.co/NZHxVQvlU2

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over 5 years ago

@FrankPallone @FrankPallone people w 100% fatal & paralyzing #ALS have no disease modifying Rx drugs. Will @EnergyCommerce give people #DyingWaiting a Congressional Hearing to learn the truth of our stories about how they have regained function? #NoMoreALSWidows https://t.co/NZHxVQvlU2

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