#ALSisNotRare - Twitter Hashtag

about 3 years ago

Thanks @ShereeWLWT for continuing to keep the fight for ALS patients in the news. It is appreciated. #ALSisNotRare #ApproveNurown

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😇Uriel🌞Mahdi😇 @Uriel__Mahdi

about 4 years ago

@LorriCav @EndALSNow @leanne_yacyshyn I HAVE #ALS & HAD MY PICTURE TAKEN WITH 99 OTHER #ALS PATIENTS ON 6/11/19 #ALSISNOTRARE

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Julie Suarez @epjule

about 4 years ago · El Paso

@leanne_yacyshyn No it isn't. My neighbor's brother in law, close friend & I all have ALS. #ALSisnotrare

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Kandy Simons @KandySimons

about 4 years ago

Sad to know that we’ve been led to believe that this is a rare disease when that’s not the case. Very sorry that Lyndsey Vonn & her family are in the trenches now. Would be incredible if our @DrCaliff_FDA @FDACDERDirector @FDAMedia acted with the urgency needed. #ALSisNotRare

Nicole Cimbura @nicolecimbura

about 4 years ago

Heartbreaking to learn of another ALS diagnosis. Olympic skier, Lyndsey Vonn’s mom, is battling ALS. No where near as rare as people would like to have us think.https://t.co/3xiOdpQbuZ

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Kandy Simons @KandySimons

over 4 years ago · Midwest City

#ALSisNotRare Please take 10 minutes to read this story. Bethany’s teenage daughter Sierra fought bravely, with grace and joy, in her journey with #ALS. Bethany explains why she is still fighting so that others may not have to endure the pain her family has endured. 💔

Project ALS @ProjectALSorg

over 4 years ago

Bethany Bland reminds us why she’s still in the fight: https://t.co/4KbOLPY8mF

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Farmstrong @farmstronginfo

about 5 years ago

YES YES YES! The normal pattern has failed for 30+ years for no valid reason. It's time to change the #patternOfFailure like #hiv did & save this beautiful husband of mine & tens of thousands more. Join us today @RepScottPerry @EmmonsRachel #ALSisNotRare #als #turnMapRed

Pat Dolan @Team_Thriving

about 5 years ago

@RepScottPerry I’m normal, unfortunately Diagnosed in the normal age range Progressed normally (cane walker chair feeding-tube vent) Treated normally with two approved drugs Outcome normal, death Please stop the normalcy of ALS #ACT4ALS @sandymorris333 @PaustDeb @farmstronginfo

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Suzanne Gallo @SuzaneGallo

over 5 years ago

@LyndaBrininger @sabrevaya @alsassociation ALS is not a rare disease. My father passed from it 4 years ago. My husband was diagnosed with ALS in January 2021. In my community in Florida, all three of my neighbors have a close relative that passed from ALS. #ALSISNOTRARE

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Elizabeth McCormick @emmccormick2005

over 5 years ago

#ALSisNotRare

lori andre @loriandre3

over 5 years ago · Chicago

Wearing an “I AM ALS” t-shirt is always a good convo starter. A workman at our house today asked what is the t-shirt all about? Brian said, “i have als”. And he said, my wife died 6 years ago from ALS. Not so small ALS world. @iamalsorg

loriandre3's tweet photo. Wearing an “I AM ALS” t-shirt is always a good convo starter. A workman at our house today asked what is the t-shirt all about? Brian said, “i have als”. And he said, my wife died 6 years ago from ALS. Not so small ALS world. @iamalsorg https://t.co/89t7suSE2S

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Elizabeth McCormick @emmccormick2005

about 6 years ago

And I was stunned to learn that ALS had taken the lives of actor and playwright Sam Shepard, former NY Sen Jacob Javits, cartoonist and Spongebob creator Stephen Hillenburg, actors Dennis Day, David Niven and Lane Smith, and Mao Zedong. #ALSisnotrare #LetsPayAttention

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Tim McDaniel @TimTMcDaniel

about 7 years ago

Maureen lived a mile away and I knew her. Was causal friends with her Ex (who died two years to the date prior to Maureen). Her son use to hang out at our house. Prayers needed for the kids with both parents gone. #ALSisnotrare https://t.co/wh6ibZFY1n

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