Top Tweets for #IceBucketFail
When are we going to see some support for @BrainstormCell and the 3b trial?
@iamalsorg @bsw5020 @andreaSgoodman @stevens_nation @AmandaS49737509 @TheLeadCNN The drug will disappear, if all remain silent!!! #Nurown #icebucketfail
EAP results were great.
@MinoShah Worse yet, they did not realize the ALS Association is the poorest excuse for a charity that is in existence. Horrible, block the very people they serve, only worried about 20 million dollar payroll, and have zero ALS Connections. #Icebucketfail
@Ml1969 @ginaGib68993499 @aVoice4ALS @sandymorris333 @US_FDA @DrCaliff_FDA @FDACBER Oh that is just the tip of the iceberg #icebucketfail
#icebucketfail in every way!!!Go local chapters. The National is a discgrace in every way!!
Quick update & proud to say that the @ALSCTChapter was among those who sued AND won against the national @alsassociation. Thank you for standing up for what you believed wrong. Sadly, it was all about the money. #ALS #icebucketfail
https://t.co/SlHdSCythi
Quick update & proud to say that the @ALSCTChapter was among those who sued AND won against the national @alsassociation. Thank you for standing up for what you believed wrong. Sadly, it was all about the money. #ALS #icebucketfail
https://t.co/SlHdSCythi
I guess the question is what HAS the @alsassociation done for pALS? This is Alex in 2014 doing the #icebucketfail and then this past May, 3 yrs in. One of the reasons they are being sued by some of their chapters is ALSA’s greed. No conspiracy. @KRob8753
. @NotSoVanilla did a heart-wrenching documentary for @HBO VICE called "Die Trying: the battle for #ALS treatments"
Nothing's changed since this aired
People are #DyingWaiting for drugs that work on some!
#SomeIsEnough
https://t.co/3aXxWSMQku
#IceBucketChallenge
#IceBucketFail
nothing raises my blood pressure like newly diagnosed patients who fundraise for the utterly unworthy, money hog, status-quo-loving @alsassociation
Compare how @alsassociation supported AMYLYX approval - even though no one regained function - but criticized NurOwn even when multiple people regained function.
ALSA #IceBucket $ could have increased #ALS trial size & it's possible NurOwn would be approved today
#IceBucketFail
"In an interview with MarketWatch, ALSA CEO Balas said she didn’t know whether there was a connection between BrainStorm and Terminally Persistent, but suggested that there was one." ALSA sees a problem with pALS advocating in favor of NurOwn?
https://t.co/UlOYGJHq37
While UK celebrates winning 50M pounds ($67M) for research into #ALS...
In US, #ALS Assn:
▪️ Sits on $93M in NET ASSETS
▪️ Paid $12.4M in salaries
▪️ Spent $7.1M on fundraising
▪️ Spent $0 on funding #ExpandedAccess TODAY to help people #DyingWaiting
#RainyDay #IceBucketFail
@ABC Many disease non-profits spend more $ on fundraising than research to helps patients. #ALS Assn is an example. It also spends more on $alaries than research.
#IceBucketFail
#IceBucketChallenge
#ShowMetheMoney
@SenWhitehouse @RonWyden @RepMaloney @OversightDems @SenJohnThune
Did you know the #ALS Assn
▪ Spends 2x more on salaries than research?
▪ Spends More on fundraising than on research?
▪ Spent 0 on #CompassionateUse
▪ Has over $70M in bank from #IceBucketChallenge
#IcebucketFail didnt benefit #TunchIlkin
@KDKA @WTAE @fox53wpgh @WPXI
Is Mike doing the Ice Bucket Challenge for "ALS unity"? @WSJopinion #icebucketfail @biospace @statnews @gregggonsalves @US_FDA
@alsassociation #ALS #MND #IBC #2030_MY_ASS #NUROWN #ENDALS @FDACDERDirector
*FULL version of the #emptybucketchallenge is HERE:
https://t.co/anvYPThhHB
@factcheckals @BrainstormCell I don't engage in dialogue w people hiding behind a pseudonym, hiding their identities, their motiviations & their org's sponsors.
How ironic we can't Fact Check who you are, your lack of medical credentials or expertise.
No Identity. No Credibility.
#ALSAHack
#IceBucketFail
Many in #ALS community won't support this bc donations go to @alsassociation that spends:
$10.678M on salaries
$6M on fundraising
$5M on research
$0 on #DrugsinBodies today
While $70M sits in bank from the #IcebucketFail
Donate to Healey Center wehre 100% goes to patients
Excited to share that @CandyDigital just dropped its first NFT!! Lou Gehrig's "Luckiest Man" Speech.
Head to https://t.co/JIg6qkoTNF to grab a piece of digital baseball history.
@gregggonsalves @alzassociation People dying of #ALS have been saying the same thing re @alsassociation. $70M+ bankrolled from #IceBucketFail & refuses to spend it to help what patients want.
$10.678M salaries vs $5M research?
Then audacity to ask patients to donate their Estates!
Classless & incompetent.
Please follow No More Excuses for the REAL and TRUE facts. No BS. My 29 year old daughter needs #druginbodies #ALShearings #icebucketfail #nurownworks #ACTforALS
While "a certain group" is asking today for #AACT (with about a 180 sponsor head start) pALS should demand #ALSHEARINGS! Follow real time progress of H3537 at No More Excuses on FB. NO donation required! This is #ALS #grassroots! @JeffFortenberry @SenatorBraun #alsa #nurown #AACT
Don't donate to #ALS Assn until it fixes its priorities
💰 $10.7M on salaries
💰 $5.9M on fundraising
💰 $5M on research
💰 0 on #CompassionateUse today
Give $ to Healey #ExpandedAccess where 100% goes to #DrugsinBodies or to @iamals.org
#IceBucketFail
https://t.co/wxF07f0wtc
@HaterAls @Lance4good Lance the guy who bragged about the piles and piles of cash on the conference room tables. Helped him double his salary. Not patients. #icebucketfail.
@ShereeWLWT @glennf65 @WLWT @PatriciaManhar1 Thank you for your amazing #ALS coverage! Sadly, what is happening to thousands of dying #ALS patients like myself and @PatriciaManhar1 right now due to the @US_FDA and @FDACBER approach is a story that makes #Watergate look simple.. #ALSA #ENDALS NME #dyingwaiting #redtape
@ShereeWLWT is awesome! Thank you for fighting for us! #IAmALS #NoMoreExcuses #DrugsinBodies #DyingWaiting @US_FDA @JoeBiden @DrBiden #IceBucketFail @ProjectALSorg @Chance4Lisa @dbongino @RealCandaceO @60Minutes @AP #NurOwnNow @senrobportman @SenSherrodBrown @RepSteveChabot
‼️GET IN ON #ALSAwareness NEWS! #pALS fight to get #DrugsInBodies now as #FDARedtape prevents sufferers from accessing PROMISING TREATMENTS!
@cnnhealth @ABC @60Minutes @TODAYshow @TODAYshowHealth @ABCNewsHealth @Nightline
@byronpitts @danbharris #EneALS
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