Elizabeth McCormick

Hope is a verb. Hope is the only alternative in the face of uncertainty. Today more than ever. Mobilize. Fight. Make right real.

[Seth Abramson @SethAbramson]

RETWEET if you consider Rep. Adam Schiff an American hero.

[Elizabeth McCormick @emmccormick2005]

https://t.co/wh2n0U5Zcs

[Elizabeth McCormick @emmccormick2005]

This 👇. So much. #NotTodayALS

[Kate Bowler @KatecBowler]

a blessing for the life you didn't choose

Blessed are you when the shock subsides,
when vaguely, you see a line appear that divides before and after.

You didn’t draw it, and can barely even make it out.
But as surely as minutes add up to hours and days,
here you are,
forced into a story you never would have written.

Blessed are you in the tender place of wonder and dread,
Wondering how to be whole when dreams have disappeared and part of you with them,
where mastery, control, determination, bootstrapping, and grit,
are consigned to the realm of before (where most of the world lives),
in the fever dream that promises infinite choices, unlimited progress, best life now.

Blessed are we in the after, loudly shouting: is there anybody here?
We hear the echo, the shuffle of feet, the murmur of others
asking the same question, together in the knowledge
that we are far beyond what we know.

Show us a glimmer of possibility in this new constraint,
that small truths will be given back to us.
We are held.
We are safe.
We are loved.
We are loved.
We are loved.

And best of all: We are not alone.

[Nicole Cimbura @nicolecimbura]

Grateful for the leadership of @RepAnnaEshoo & her fabulous staff who lean in & help the ALS community.

[Shah Minokadeh, M.D. @MinoShah]

My family and I are grateful for you @RepAnnaEshoo.🙏❤️

I, like @jamieroseberryy & so many others, have suffered horribly for years while knowing that #NurownWorks, but unable to have access & hope.

We NEED Congress to advocate on our behalf & DEMAND that the @FDACBER exercise regulatory flexibility & grant #Nurown Accelerated Approval with a Phase 4 postmarketing study. @DrCaliff_FDA

HORRIFIC 100% FATAL ALS IS NOT RARE & the incidence is rapidly increasing. #EndALS

@SenAmyKlobuchar @SenatorWicker @SenKevinCramer @JohnBoozman @SteveDaines @RepStephenLynch @RepMariaSalazar @RepJenniffer @RepPaulTonko @RepChuck @RepDonBacon @Congressman_JVD @RepDavids @kevinmullin @RepChrisPappas @SenRickScott
@RepGuthrie @RepLarryBucshon   @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun 
@RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons @RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDonBacon @SenSanders @RepMMM @RogerMarshallMD @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @RepBarragan @RepAngieCraig @RepKimSchrier @RepLoriTrahan @cathymcmorris @PattyMurray

[Elizabeth McCormick @emmccormick2005]

Thanks everyone for the birthday wishes. It has been a great day surrounded by people I love and who love me back. Can't ask for more than that. Grateful for the chance to celebrate another year of this great life. #NotTodayALS

[car128 @crayne128]

Please help us @SecBecerra. #NurOwn has shown real world evidence, Nfl biomarker, and safety data. We are #dyingwaiting! #ALS happens to 1 in 300 people!!! The #FDA is failing us!!

[Sister Helen Prejean @helenprejean]

Former Alabama governors Bentley and Siegelman: “We missed our chance to confront the death penalty and have lived to regret it, but it is not too late for today’s elected officials to do the morally right thing.” https://t.co/HUD1bUsxEX

[Tal Gazanda @Tal_Gazanda]

More than anything, #ALS is a heart-breaking disease that can affect anyone. They're #DyingWaiting and pleading for the approval of #Nurown because #NurownWorks. We urge @US_FDA @FDACBER @DrCaliff_FDA to listen to their pleas and take action. #EndALS.

@RepJenniffer @RepDonBacon

[Elizabeth McCormick @emmccormick2005]

@sandrawmarlowe @USCIS @sandrawmarlowe I spent my professional life advocating for immigrants, asylum seekers especially, before my diagnosis. That fight is as hard as the fight to beat ALS but the folks fighting for what's right in our immigration system are equally inspiring.

[Elizabeth McCormick @emmccormick2005]

Thank you @lizzo & @maya_bulmer for a night of pure joy & positivity, the perfect antidote to any day where life seems hard and sparkles feel few & far between. In case nobody told you today, you're special. #NotTodayALS

[Mayuri Om Saxena @Mayuri_Saxena]

RT if you agree there is always room for compassion! 400 compassion care kits for the homeless: 100 for each time @biogen rejected my family's plea to access life saving treatment #Tofersen, a now @US_FDA approved drug to slow and possibly halt #SOD1 #ALS. I was just in a wheelchair when we requested for #ExpandedAccess. Now I am trached, quadriplegic and on a ventilator. Clinical trials targeting life threatening diseases should incorporate Expanded Access programs into their design because there is always room for compassion.

Thanks to many of you who helped make this vision become a reality. You show others what this world is capable of. #ALSAwarenessMonth

[Equal Justice Initiative @eji_org]

On this day in 1954, the Supreme Court decision in Brown v. Board of Education sparked massive resistance among white communities committed to segregation. To overcome racial inequality, we must confront our history. https://t.co/Z6d4qNTepu

[KIND @supportKIND]

The Biden Admin's new asylum rule is not only contrary to domestic and international law but also goes against our values as a nation. This policy will only deepen the vulnerability of children, families, and others seeking safety

[Elizabeth McCormick @emmccormick2005]

"The success of the tofersen trial teaches us a few things about ALS and ALS trials. First and foremost, the study suggests ALS is a treatable disease, and therapeutic intervention has the potential to provide clinically meaningful therapeutic effects."

[L Brielmaier @BrielmaierL]

Opinion | The Broader Significance of a New Drug for a Rare Form of ALS
(a good review / history)
https://t.co/kRIxRBwAQV
"indicates that a measurable therapeutic effect in ALS may take longer than just 28 weeks."

[Shah Minokadeh, M.D. @MinoShah]

I created a YouTube channel for the ALS videos I put together.

I don't know if these videos will make an impact, but I've tried to get those in power to see that ALS can happen to ANYONE.

They need to see our terrible suffering & be moved to act.

I humbly offer this channel as a way to share our advocacy. I'm happy to also send the original video files to anyone who wants to share any of them as their own.

I email all of the videos to hundreds of congressional staffers, but if you have a relationship with your Congressional offices, it would be a big help to our cause to urge them to speak to the FDA about the importance of FDA regulatory flexibility for 100% fatal ALS.

Perhaps one of these videos may help.
https://t.co/c71Nm08hai

[ALS Advocacy @alsadvocacy]

Bill aims to improve air travel for passengers with disabilities https://t.co/464ZSJmX5J

[#WOMENSART @womensart1]

Frida Kahlo with her lover, singer Chavela Vargas, 1945 #WomensArt
Happy Friday all! ❤

[Governor Bill Anoatubby @GovAnoatubby]

We join leaders of the Five Tribes in calling on the Oklahoma Legislature to overturn recent vetoes by Governor Stitt.