Top Tweets for #ALSAdvocate

about 2 years ago

ALS advocates are on the frontlines in the fight for new treatments and a cure. You can help change laws and policies that impact people living with #ALS and their loved ones. Become an #ALSAdvocate today: https://t.co/5uLD40TLl5

680

about 2 years ago

Looking to make a difference in the lives of people living with #ALS and their loved ones? Become an #ALSAdvocate TODAY! https://t.co/5uLD40TLl5

902

Brigance Brigade Foundation @BriganceBrigade

over 2 years ago

over 2 years ago

Please consider donating to #BBF15DaysofGiving initiative today and help offset some of these extremely high prescription costs for our #ALSChampions. Donate today: https://t.co/Wd03fAJ5u9 #BBF15 #GivingSeason #endALS #FightingALS #ALSadvocate #AllThingsPossible @OJBrigance

BriganceBrigade's tweet photo. Please consider donating to #BBF15DaysofGiving initiative today and help offset some of these extremely high prescription costs for our #ALSChampions.

Donate today: https://t.co/Wd03fAJ5u9

#BBF15 #GivingSeason #endALS #FightingALS #ALSadvocate #AllThingsPossible @OJBrigance https://t.co/Nnu4E6OZjY

232

Brigance Brigade Foundation @BriganceBrigade

over 2 years ago

almost 3 years ago

BBF's 2023 PALS Grant Program applications will now remain open through December 15th - Our mission to equip, encourage and empower our PALS is bigger than any deadline. To learn more about our PAL Grant Program, please visit https://t.co/m5n0WwQm4s #BBF15 #endALS #ALSAdvocate

BriganceBrigade's tweet photo. BBF's 2023 PALS Grant Program applications will now remain open through December 15th - Our mission to equip, encourage and empower our PALS is bigger than any deadline. To learn more about our PAL Grant Program, please visit https://t.co/m5n0WwQm4s

#BBF15 #endALS #ALSAdvocate https://t.co/sqLwfvA4vs

439

almost 3 years ago

@MinoSean Wow, that's awful! I'm sorry you were treated so disrespectfully. I enjoy your tweets and see you as a fighter and #ALSadvocate. I've never once thought of you as bitter. Please know that you're a valuable member of the #ALScommunity.

872

almost 3 years ago

Looking to make a difference in the lives of people living with #ALS and their loved ones? Become an #ALSAdvocate TODAY! https://t.co/u2vM2r1f1v

almost 3 years ago

I can't believe this! It's so frustrating! I specifically explained the ALSFRS-R in my #NurOwn #AdCom statement! Do they even read what we have to say? #ALS #ALSadvocate #NurOwnworks

AZ Latina ☮️🌊🟦

@aVoice4ALS

almost 3 years ago

HUGE ERROR in #NurOwn AdCom No understanding of ALSFRS-R scale nor Floor Effect... nor apparently SIMPLE MATH. FDA statisticians said Floor Effect wasn't real then AdCom members believed them, including neuromuscular specialists who must not understand ALSFRS scale & clearly don't treat many #ALS patients. @FDACBER Purported Reasons? Not everyone plateaued. No kidding! 🙄 🤔Simple fractions my 3rd grade niece learned 🔹ALSFRS is scale with 4 domains & 12 questions 🔹Floor Effect on 1 question ≠ Floor Effect on all 🔹Floor Effect in 1 domain ≠ Floor Effect on all 🔹12 Questions = 12 opportunities to measure decline 🔹Denominator = 12 🔹Numerator = Number of Questions impacted by Floor Effect for each trial participant 🤔More fractions 🔹Appx 1/3 (37%) had impact on Gross Motor Skills 🔹Appx 4/10 (42%) had impact on Fine Motor Skills 🔹That means ≈ 2/3 to 3/5 didn't have a Floor Effect in those domains & likely they kept declining. 🔹Bulbar & Respiratory domains had almost no effect & likely kept declining. We are dealing with people's lives for God's sake. Is it too much to ask that the PhD biostatisticians at the @US_FDA understand simple math & the functional scale on which all the endpoints are based? No Due Process Maybe just maybe if the AdCom Chair would have allowed Brainstorm's CEO (a PhD biostatistician) or the trial's PI (40 year ALS neurologist) a chance to rebut this ridiculous assertion, the AdCom members would have understood? Why does this matter? The consistency of the post hoc Floor Effect data confirms that #RWD that #NurOwnWorks -- just as all the trial participants & @MayoClinic neurologist Dr Tony Windebank said in their testimony that 17 AdCom members ignored. Why didn't the ALS Patient Rep correct this? Sadly the ALS patient rep is supposed to be there to correct things like this and he didn't have a clue as he appeared to be earlier in his progression. Perhaps if someone like #neurologist @Sampat_md, or Johns Hopkins educated @MinoSean or former pharma Exec Michael Robinson MD had been chosen, this issue would have been clarified. Since the Type A meeting in January, the FDA knew the Floor Effect was a big issue in this approval. Is it too much to ask to ensure the ALS patient representative has experienced the Floor Effect or at least has training sufficient to explain it to others? And you wonder why the ALS community is LIVID. This is one of MANY mistakes that Brainstorm wasn't given an opportunity to explain. 🤬😡 @DrCaliff_FDA @FDACBER @POTUS @SecBecerra @neeratanden @VP @RepAnnaEshoo @RepSchakowsky @rosadelauro @cathymcmorris @RepGuthrie @RepAndyHarrisMD @RepJohnJoyce @RepGregMurphy @RepLBR @RepJohnCurtis @SenBillCassidy @SenJohnBarrasso @SenSanders @SenAmyKlobuchar @SenatorWicker @DorisMatsui @RepBradWenstrup @TodayShow @Nightline @CBSSunday @jimmykimmel @JimmyKimmelLive @ShereeWLWT @NPR @nprpolitics @washingtonpost @NYTHealth @latimes @ocregister @BioCentury @biospace @drsanjaygupta @WillieGeist @jonstewart @TheProblem @Maddow #neurotwitter #NurOwnWorks

$aVoice4ALS's tweet photo. HUGE ERROR in #NurOwn AdCom No understanding of ALSFRS-R scale nor Floor Effect... nor apparently SIMPLE MATH. FDA statisticians said Floor Effect wasn't real then AdCom members believed them, including neuromuscular specialists who must not understand ALSFRS scale & clearly don't treat many #ALS patients. @FDACBER Purported Reasons? Not everyone plateaued. No kidding! 🙄 🤔Simple fractions my 3rd grade niece learned 🔹ALSFRS is scale with 4 domains & 12 questions 🔹Floor Effect on 1 question ≠ Floor Effect on all 🔹Floor Effect in 1 domain ≠ Floor Effect on all 🔹12 Questions = 12 opportunities to measure decline 🔹Denominator = 12 🔹Numerator = Number of Questions impacted by Floor Effect for each trial participant 🤔More fractions 🔹Appx 1/3 (37%) had impact on Gross Motor Skills 🔹Appx 4/10 (42%) had impact on Fine Motor Skills 🔹That means ≈ 2/3 to 3/5 didn't have a Floor Effect in those domains & likely they kept declining. 🔹Bulbar & Respiratory domains had almost no effect & likely kept declining. We are dealing with people's lives for God's sake. Is it too much to ask that the PhD biostatisticians at the @US_FDA understand simple math & the functional scale on which all the endpoints are based? No Due Process Maybe just maybe if the AdCom Chair would have allowed Brainstorm's CEO (a PhD biostatistician) or the trial's PI (40 year ALS neurologist) a chance to rebut this ridiculous assertion, the AdCom members would have understood? Why does this matter? The consistency of the post hoc Floor Effect data confirms that #RWD that #NurOwnWorks -- just as all the trial participants & @MayoClinic neurologist Dr Tony Windebank said in their testimony that 17 AdCom members ignored. Why didn't the ALS Patient Rep correct this? Sadly the ALS patient rep is supposed to be there to correct things like this and he didn't have a clue as he appeared to be earlier in his progression. Perhaps if someone like #neurologist @Sampat_md, or Johns Hopkins educated @MinoSean or former pharma Exec Michael Robinson MD had been chosen, this issue would have been clarified. Since the Type A meeting in January, the FDA knew the Floor Effect was a big issue in this approval. Is it too much to ask to ensure the ALS patient representative has experienced the Floor Effect or at least has training sufficient to explain it to others? And you wonder why the ALS community is LIVID. This is one of MANY mistakes that Brainstorm wasn't given an opportunity to explain. 🤬😡 @DrCaliff_FDA @FDACBER @POTUS @SecBecerra @neeratanden @VP @RepAnnaEshoo @RepSchakowsky @rosadelauro @cathymcmorris @RepGuthrie @RepAndyHarrisMD @RepJohnJoyce @RepGregMurphy @RepLBR @RepJohnCurtis @SenBillCassidy @SenJohnBarrasso @SenSanders @SenAmyKlobuchar @SenatorWicker @DorisMatsui @RepBradWenstrup @TodayShow @Nightline @CBSSunday @jimmykimmel @JimmyKimmelLive @ShereeWLWT @NPR @nprpolitics @washingtonpost @NYTHealth @latimes @ocregister @BioCentury @biospace @drsanjaygupta @WillieGeist @jonstewart @TheProblem @Maddow #neurotwitter #NurOwnWorks$

almost 3 years ago

I just finished the rough draft of my #AdCom statement urging the @US_FDA to approve #NurOwn! How's yours coming? Remember, the deadline is September 20th, so everyone in the #ALScommunity, get to work! #ALS #ALSadvocate #NurOwnworks

almost 3 years ago

I hope my #NurOwn #AdComm statement turns out this powerful and eloquent! I'm trying to illustrate the day to day reality of #ALS, explain the ALSFRS-R, why it's imperfect, what 1 point means, and lend humanity to a scientific scale. #NurOwnworks #ALScommunity #ALSadvocate

AZ Latina ☮️🌊🟦

@aVoice4ALS

almost 3 years ago

"Your decision has the power to rewrite the narrative for #ALS patients. Please let it be one of hope, compassion & a testament to the value of every human life." ~ 24 yr old's plea for #NurOwn https://t.co/yBq0wc8L5A @FDACBER @DrCaliff_FDA help him @CDCEnvironment count him

aVoice4ALS's tweet photo. "Your decision has the power to rewrite the narrative for #ALS patients. Please let it be one of hope, compassion & a testament to the value of every human life."
~ 24 yr old's plea for #NurOwn

https://t.co/yBq0wc8L5A

@FDACBER @DrCaliff_FDA help him
@CDCEnvironment count him https://t.co/K847FAkzcy

almost 3 years ago

I'm a third of the way done with my #AdCom statement for #NurOwn! Are you working on yours? @iamalsorg has a great guide to writing a statement. Check it out! #ALS #ALSadvocate https://t.co/YqmmO2NWO9

ALS Advocacy @alsadvocacy

almost 3 years ago

This is an important read, especially if you're writing an #AdCom statement for ##NurOwn! Get ideas for your statement from @IAMALS! #ALS #ALSadvocate #ALScommunity

almost 3 years ago

A paper that can help us understand some challenges of ALSFRS-R . Lack of linearity is an important issue. Some points are more important than others. https://t.co/u0xofmM51y

alsadvocacy's tweet photo. A paper that can help us understand some challenges of ALSFRS-R . Lack of linearity is an important issue. Some points are more important than others.
https://t.co/u0xofmM51y https://t.co/sj6URqlLCW

about 3 years ago

Congress needs to hear from YOU: Become an #ALSAdvocate today! Sign up at https://t.co/u2vM2r1f1v or text “ALS” to 855-469-2621. #ALSAdvocacy #FundALSResearch

about 3 years ago

"I don't want to prove anything. I merely want to live." Tolstoy, Anna Karenina. I don't want to be an #ALSadvocate. I don't want to be an #ALSwarrior. I just want to be an ordinary woman with the privilege of growing old. #ALS #EndALS

Performance Home Medical @PerformanceHom1

about 3 years ago

Thank you to all of the #ALSadvocates who took action and shared their stories for #ALSAwarenessMonth! There's more #ALSAdvocacy coming - join us and become an #ALSAdvocate TODAY: https://t.co/JJvFdnN0mw

alsassociation's tweet photo. Thank you to all of the #ALSadvocates who took action and shared their stories for #ALSAwarenessMonth! There's more #ALSAdvocacy coming - join us and become an #ALSAdvocate TODAY: https://t.co/JJvFdnN0mw https://t.co/h4Aw0rTQwA

about 3 years ago

Let’s help defeat ALS and spread awareness! Follow these great ALS organizations: @alsassociation, ALS Worldwide, @HerALSStory, @iamalsorg, @LesTurnerALS, and @SusanMastALS. #ALS #ALSawarenessMonth #DefeatALS #FightALS #ALSadvocate #FindaCure #PHM

PerformanceHom1's tweet photo. Let’s help defeat ALS and spread awareness! Follow these great ALS organizations: @alsassociation, ALS Worldwide, @HerALSStory, @iamalsorg, @LesTurnerALS, and @SusanMastALS.

#ALS #ALSawarenessMonth #DefeatALS #FightALS
#ALSadvocate #FindaCure #PHM https://t.co/qFuqBdJx7G

104

about 3 years ago

Dawnn, an #ALSAdvocate participating in #ALS research, urges lawmakers to #FundALSResearch to find critical new treatments and a cure for the disease. Tell lawmakers how vital increased ALS research funding is TODAY: https://t.co/LDCAeiZS9O