Webie

[Webie @Webie11]

Steve passed away yesterday. Please don't send him any more messages.

[No More Excuses ALS Watchdogs! @als_now]

More than 48,000 people received an UNTESTED procedure, while thousands are dying from ALS waiting on "DATA" to arrive on a 10 year old drug!! @SecAzar @realDonaldTrump @cnnhealth @markmeadows @BrookeRollinstx @HHS_ASH @foxandfriends @statnews @SteveFDA @FDACBER @DrWoodcockFDA

[EndALS @FinishALS]

Why isn’t every ALS org posting this petition? If you asked every person with ALS what their priority would be right now, I think they would say the two bills in Congress. Help us get visibility and votes, @ALSTDI and @alsassociation. If we truly are one community, let’s go.

[Deborah Midgley @DeborahMidgley1]

Dear @alsassociation ,
My friend, Tammy died of ALS this week. As a fellow pALS, I demand to know where your actual support is regarding H.R. 7071- The Accelerating Access to Cinical Therapies for ALS Act! You talk BIG, but I see no REAL action!
#NurOwn #ALStragedy

[No More Excuses ALS Watchdogs! @als_now]

#ALS patients, call your LOCAL ALSA chapter and demand their support on HR.7071 and PPA. Otherwise, stop giving money! Why? These bills might literally SAVE YOUR LIFE in 2021! @alsassociation @alsagoldenwest @ALSAlabama #iamalsorg @ALSANorthernOH @ALSFlorida @alsncchapter @ALSAMA

[No More Excuses ALS Watchdogs! @als_now]

#AskFDA "Operation Warp Speed", CTAP, Convalescent Plasma Program, WHATEVER IT TAKES for a virus that's .04% fatal. Meanwhile, you do NOTHING for the most cruel, inhumane disease ever known, ALS. The reason is simple. YOU DO NOT CARE ENOUGH. #ALS #ENDALS @alsassociation @FDACBER

[No More Excuses ALS Watchdogs! @als_now]

#ASKFDA What are you doing now to ensure that the worst case scenario happening in ALS now NEVER happens again? These people are literally dying waiting on access to drugs @US_FDA has kept in trials for a DECADE. Serious Q: How can you live with yourselves? @alsassociation #ALS

[Brian Wallach @bsw5020]

Not today ALS. Not today.

[ALS Advocacy @alsadvocacy]

A thought for the afternoon --

[Brian Wallach @bsw5020]

This life, it’s all about family.

In 2018, I met with 100s to learn everything about ALS.

In 2019, I flew 120,000 miles to advocate for treatments and cures.

In 2020, we are building every tool possible to speed access to therapies.

All for one reason: my family and yours. ❤️

[Shah Minokadeh, M.D. @MinoShah]

It's difficult to tolerate the cruelty.

@SteveFDA @FDACBER, please explain to Dan's children why their father had to die yesterday at 43 years old. #Nurown

ALS is 100% fatal & our government drags its feet while we die needlessly.

@HHS_ASH @NIHDirector
https://t.co/apHToGkRSg

[Shah Minokadeh, M.D. @MinoShah]

Richard died of 100% fatal #ALS denied #Nurown treatment despite witnessing UNPRECEDENTED benefits in multiple patients.

@SteveFDA @FDACBER, can you please explain why to his grieving wife @KathyCo74123384?

@realdonaldtrump @MarkMeadows @SecAzar @VP @POTUS @NIHDirector @HHS_ASH

[Smithstrongmom @Smithstrongmom1]

My son Josh is 30 years old! He has been in the Brainstorm trial and shown nothing but improvement. Now, since his last injection in January, he is progressing. You CAN help make a difference! Do it NOW! Thank you~

[No More Excuses ALS Watchdogs! @als_now]

Meet Mrs. Betsy McCormick! Our 9th (and last) NurOwn trial video. 14 months ago we began our truth quest: now it's over. People with ALS now die each day wondering "what if?" Choose wisely when asked "Donate here!" #ALS #ENDALS #NUROWN @alsassociation #MND
https://t.co/D6cQjQJoI2

[BrainStorm @BrainstormCell]

The Global #ALS #MND #ELA Community needs you to join the fight to #EndALS!
#ALSMNDWithoutBorders #ALSstateofmind

[BrainStorm @BrainstormCell]

June 21 is a solstice -a turning point. It is our hope that soon too it will be a turning point for ALS/MND research. Join us and help raise awareness. #ALSMNDWithoutBorders #ALSStateofmind

[Shah Minokadeh, M.D. @MinoShah]

Jay died of #ALS denied lifesaving #Nurown treatment stuck >10 years in the #FDA.

How many more have to die @stevefda?

@realdonaldtrump @MarkMeadows @SecAzar @VP @FDACBER @JeffFortenberry @kellyannepolls @NIHDirector @HHS_ASH @Surgeon_General @cylebo https://t.co/Kat31W001i

[Shah Minokadeh, M.D. @MinoShah]

As your constituent & someone impacted by #ALS, I urge @SenKamalaHarris to cosponsor the #PromisingPathwayAct to create a faster pathway for new #ALS therapies. Contact @SenMikeBraun now. #ALSAdvocacy

@KamalaHarris @sabrinasingh24

[Shah Minokadeh, M.D. @MinoShah]

#Nurown trials/approval regulated by the @FDACBER.
Dr. Peter Marks was Deputy Director since 2012 & is Director since 2016

Everyone who has lost a loved one to/currently dying of #ALS denied lifesaving Nurown stuck in the FDA >10 years needs to know him
@SteveFDA @DrWoodcockFDA

[No More Excuses ALS Watchdogs! @als_now]

A $1.1M Covid bill, 62 days in ICU. "The doctors were throwing everything at me" (50 items a day). He lived, & government paid it all. But: for those with ALS? "So sorry, go home and die". Think we don't have an ALS discrimination/fairness gap @alsassociation? #ALS #ENDALS CHOICE