Danny Williams

Fighting ALS for a cure

[George Takei @GeorgeTakei]

Senate Majority Leader Chuck Schumer is pushing a workaround to Sen. Tommy Tuberville’s blockade on military promotions. He’ll need 9 GOP senators to help this get past the filibuster. Will the GOP continue to allow Tuberville to inflict such damage to our military readiness and officer morale? Or will they do the right thing and help end Tuberville’s shameful campaign?

[Danny Williams @AlsDannys]

https://t.co/LBueBP3toR

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

29 yo Eric worked w #LAFD when dx'd w fatal #ALS

❤️Rcvd a #stemcell therapy #NurOwn
❤️Slowed his paralysis & improved his breathing
💔Can't get more w/o #FDA approval

⬇️Sign Petition to help Eric
https://t.co/S2NhIvuD3L

#AxeALS @stevens_nation
#firefighter #firefighters #EMT

[axeALSFoundation @stevens_nation]

We know #NurOwnWorks. Eric is living proof. Over 3 years after diagnosis, he’s still walking short distances, eating normally, speaking clearly, & breathing scores remain strong. We won’t stop fighting until it’s approved. #NoAdComNoVoice https://t.co/3eJmWmi0gw

[Nicole Cimbura @nicolecimbura]

I am an #ALS Widow.
In 2015, we watched #NurOwn work for Mike in p2. In p3 it worked for @pjgreen @sandymorris333 
@stevens_nation @klink52 @Smithstrongmom1 & others.

It's time @US_FDA let us speak at an AdCom.
https://t.co/cwrVccxTpX
#NurOwnWorks #NoAdComNoVoice

[axeALSFoundation @stevens_nation]

We know #NurOwn is the reason Eric is still playing with his little girl. We are thrilled to hear the news that @BrainstormCell is filing the BLA. We are hopeful @US_FDA will exercise its regulatory flexibility when considering approval of this treatment. All pALS deserve access!

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

@60Minutes @jon_wertheim @klink52 @Smithstrongmom1 @stevens_nation @nicolecimbura @pjgreen @ThurmanTough @kandysimons @andersoncooper @ScottPelley @BillWhitakerCBS @LesleyRStahl @NorahODonnell @jdickerson @RealJanePauley @CBSSunday @NicoleYoung60 P3 data published in @MuscleAndNerve & presented at conferences by foremost #ALS experts PROVES #NurOwnWorks.

#NurOwn
▪️Slowed decline
▪️Halted progression in some
▪️Bio effect on CSF #biomarkers

PIs
▪️Robert Brown - UMass
▪️Tony Windebank - Mayo
▪️Merit Cudkowicz - MassGen

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

"There's lives out there... It's just not cool that you have something that maybe works on my mom or those other people who have #ALS."

~ 10 yr old Chloee, daughter of @JamieRoseBerryy, who #DiedWaiting for #NurOwn

#NurOwnWorks
Jamie deserved a chance!
@RepAnnaEshoo @FDACBER

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Matt has his Masters in Ag.
Mitze is a retired nurse.
MAYO is his trial site.
Windebank & Staff are his neuros.

They understand the science.
They ALL observed Matt regain function on #NurOwn.

#BelieveThem
Let them testify at an AdCom.

#NoAdComNoVoice
#NurOwnWorks
@FDACBER

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

'Til her last breath, @sandymorris333 screamed #NurOwnWorks!

True Sandy form, she knew we'd need a "deeper dive" - an AdCom where people in #NurOwn trial & EAP can share their evidence

@FDACBER let @KylanMorris1 share her mom's improvement in QOL

#SomeIsEnough
@nicolecimbura

[Craig Reagan @CraigReagan2]

https://t.co/2MFAoN0Szl
I begged you for patient access to NurOwn in Feb 2019. Now, here we are damn near 4 yrs later, still asking for access to PROVEN. SAFE. TREATMENT!!!! Please watch and retweet! #nurownworks @DrCaliff_FDA @FDACBER

[Danny Williams @AlsDannys]

@ALSTDI

[Shah Minokadeh, M.D. @MinoShah]

How many would have told you that the motor neurons are dead from #ALS after 18 months of complete paralysis in your hand?

Not bad movement for "dead" neurons.

Don't let anyone tell that there is no hope.

[Danny Williams @AlsDannys]

@CBSSunday This story needs to be told and told again!!!! The #FDA is failing, #NurOwn works and we keep suffering needlessly.

[Shah Minokadeh, M.D. @MinoShah]

@CBSSunday This is a story that needs to be told repeatedly and the #FDA held accountable. @LeeCowanCBS

ALS IS NOT RARE! The lifetime risk of horrific & 100% fatal #ALS is ONLY 1 in 300 & increasing.

The @US_FDA archaic regulatory process is killing #ALS patients & devastating families.

[Shah Minokadeh, M.D. @MinoShah]

@CBSSunday Even as a physician with #ALS, I was unable to access investigational treatments for 8 years. Now I'm on a ventilator, wheelchair bound & require 24 hour caregivers.

The suffering is EXTREME, the diagnosis 100% fatal, but we're denied treatment access. The #FDA system is broken

[No More Excuses ALS Watchdogs! @als_now]

@biospace The tide is changing. Many are admitting ALS has failed. #ALS

[BioSpace @biospace]

NurOwn: A study in the complexity of ALS trials

#clinicaltrials #therapeutics #ALS

https://t.co/9RdJGif2vf

[Danny Williams @AlsDannys]

#SenatorRomney #NurOwn

[Garrett May @rett_may]

Yesterday @US_FDA denied people with ALS like my younger brother a treatment that helped 1/3 of clinical trial participants. @SenatorRomney out of all the tremendous work you do, I need you to see my brother as deserving of your help. Why does your staff refuse to meet with me?!?

[Danny Williams @AlsDannys]

#fda #NurOwn

[GypseaSoul @GypseaSoul1982]

@bsw5020 @als_now We need someone to get to @POTUS now! @FDACBER won’t do it’s job to approve #Nurown! WE NEED AN EO! ALS Patients are dying and @SteveFDA @DrWoodcockFDA say data not good enough! Tell that to the patients that improved and the doctors that saw the results! HELP US!