Nancy Luke

[Brian Wallach @bsw5020]

In life, there are always ups and downs. I learned that early in my life. But I never expected to have to live with ALS. Which, if I am being honest, is really, really hard. Here’s to ending ALS.

Good night moon.

[Shah Minokadeh, M.D. @MinoShah]

39-year-old Jenina is dying of #ALS.
The ONLY option anyone with ALS has with the #FDA-approved drugs today is CERTAIN DEATH

ALS= 100% FATAL SINCE 1869

@DrCaliff_FDA, END the CRUEL @FDACBER regulatory RIGIDITY.
Grant #NUROWN Accelerated Approval with a Phase 4 postmarketing study.
#NurownWorks #NurownIsSafe #CriticalUnmetNeed

CONGRESS, #ALS patients NOW & FUTURE DIAGNOSED NEED YOU to listen to the #Nurown AdComm hearing on September 27th. (10am-6pm ET)

https://t.co/K1DPlIrxpt

Dying ALS, with broken bodies & no Big Pharma allies, NEED CONGRESS & #DrCaliff to ensure regulatory flexibility is applied to a disease WITH NO SURVIVORS.

The fact that #NurownWorks will be evident to ALL who listen.

YOU will realize the inhumanity & HORRIFIC suffering/deaths that will continue WITHOUT HOPE if the @FDACBER continues its CRUEL regulatory RIGIDITY for 100% PROGRESSIVE & FATAL #ALS.

HORRIFIC ALS IS NOT RARE & is rapidly becoming more common.

You're MISTAKEN if you believe that 100% FATAL #ALS can't happen to YOU.

Don't wait for ALS to enter your life to ACT.

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun
@RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @PattyMurray @SenatorDurbin @SenatorHassan @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepMariaSalazar @RepJenniffer @RepJohnJoyce @Congressman_JVD @RepDavids @RepChrisPappas @RepGusBilirakis @neeratanden46 @michaelcburgess @SenMarkey

[Brian Wallach @bsw5020]

If an FDA AdComm recommends approval of NurOwn, a person diagnosed with ALS will have 4 or 5 treatments to discuss with their doctor. Together, these treatments have the chance to stop or slow progression. This was a pipe dream when I was diagnosed. Now, it's very real.

[Farmstrong @farmstronginfo]

The #ALS community must demand the same regulatory flexibility given to (lesser, really) treatments for similar brutal diseases. The #NurOwn #Adcomm must hold a transparent, fair hearing & recommend approval based on the totality of evidence (biomarkers, function gain, etc).

[Nancy Luke @NancyLuke7]

Join Team Nutty Neurons and #EndALS! https://t.co/rKyuOgu0h7

[Nancy Luke @NancyLuke7]

As your constituent & someone impacted by #ALS, I urge @beccabalintvt to increase and not cut #ALSResearch in the FY2024 budget: https://t.co/OMxBuHqsAl

[Nancy Luke @NancyLuke7]

As your constituent & someone impacted by #ALS, I urge @peterwelch to increase and not cut #ALSResearch in the FY2024 budget: https://t.co/OMxBuHqsAl

[Nancy Luke @NancyLuke7]

As your constituent & someone impacted by #ALS, I urge @sensanders to increase and not cut #ALSResearch in the FY2024 budget: https://t.co/OMxBuHqsAl

[Nancy Luke @NancyLuke7]

https://t.co/JkPR5in9sP

[Sandra Abrevaya @sabrevaya]

Today I put our groceries on our credit card because we have nothing left in savings or checking. 24-7 caregiving bankrupts families across the country. I am not sharing this for help, we will find a way through it. I just want the world to understand what ALS is.
#EndALS

[Shah Minokadeh, M.D. @MinoShah]

Another weekend of EXTREME suffering for #ALS patients & our families as the @FDACBER delays scheduling the #Nurown AdComm hearing.

Many more will die denied safe/effective Nurown.

I wouldn't believe the #FDACBER callousness for this HORRIFIC 100% fatal disease if I wasn't living it. @DrCaliff_FDA

CONGRESS, #ALS patients with broken bodies & no Big Pharma allies need you to advocate on our behalf.

The 154 years of hopelessness for ALL diagnosed MUST END.

Empty promises from #FDA leaders below.

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepMMM @RepAnnieKuster @RepRobinKelly @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @timkaine @SenatorHassan @SenTinaSmith @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepDonBacon

[Nancy Luke @NancyLuke7]

@buitengebieden Hilarious!

[Nancy Luke @NancyLuke7]

I just tweeted my member in a campaign for @alsassociation! https://t.co/iGfpeEUjkq

[Nancy Luke @NancyLuke7]

As your constituent & someone impacted by #ALS, I urge @peterwelch to support #ALSResearch. Add your name to the FY2024 ALS Appropriations Dear Colleague letter today: https://t.co/q7kVuQXldB #FundALSResearch

[Nancy Luke @NancyLuke7]

As your constituent & someone impacted by #ALS, I urge @sensanders to support #ALSResearch. Add your name to the FY2024 ALS Appropriations Dear Colleague letter today: https://t.co/q7kVuQXldB #FundALSResearch

[Lakota Man @LakotaMan1]

If I were white, I’d want my kids to learn about Indian boarding schools and the Native American genocide. Not to make them “woke.” But to help them grow into intelligent, compassionate, well informed adults.

[SOD1 EndALS @CEHaddadNP]

As a family nurse practitioner I deeply understand the risks and benefits of Tofersen and I could give a shit that doctors for America feels the need to protect me from saving myself #tofersenadcom

[Brian Wallach @bsw5020]

Finally, I want to share the video of me and Sandra testifying yesterday.

It is time to get this drug approved.

https://t.co/Ty4GwEj8HG

[Sandra Abrevaya @sabrevaya]

Every single day ALS families are dying while we wait for a vote on this effective therapy.

@FDACBER @DrCaliff_FDA please schedule the vote on NurOwn.

The world is watching and waiting for you to take action.

[Nancy Luke @NancyLuke7]

.@BrainstormCell you promised the #ALS community minutes from your #NurOwn meeting with the @US_FDA . You haven’t shared those minutes nor have you been transparent. The ALS community deserves better. We deserve transparency.