Moonbeam Ninja

I'm am an advocate for all ALS warriors

[Shah Minokadeh, M.D. @MinoShah]

Army veteran & Michigan resident dies of 100% fatal #ALS at 47 denied safe/effective treatment. #NurownWorks #DiedWaiting

@SenStabenow @SenGaryPeters, join the 315 bipartisan House #ACTforALS cosponsors.
Cosponsor Senate companion bill, S.1813.
#EndALS
https://t.co/0ikHV89hXS

[Shah Minokadeh, M.D. @MinoShah]

Ethan deserved a chance to live @US_FDA @FDACBER.
#NurownWorks #FDAfailedALS

@SenatorBurr @SenBillCassidy @SenatorBraun @RandPaul @SenatorCollins @SenatorTimScott @MittRomney @SenTuberville @SenatorHick @RepAnnaEshoo @RepJohnCurtis @brettguthrie @SenJohnBarrasso @SenatorBraun

[Sandy Morris @sandymorris333]

Thank you @RepMikeQuigley Thank you for standing up for us, standing with us.
We are so grateful for your leadership. #ACT4ALS

[Sandy Morris @sandymorris333]

Thank you @SenJackyRosen for joining us in the fight of our lives. We are so grateful for Senators who can hear our stories & take action so that we can change our story's endings. #ACT4ALS

[Nicole Cimbura @nicolecimbura]

Thank you @SenatorWicker’s office for meeting w/members from the ALS community today & leaning in to better understand how ALS plagues Veterans at a higher https://t.co/U6rco1cD95 can help those battling ALS, a service related disease, by sponsoring #S1813 #ACT4ALS. Are you in?

[Nicole Cimbura @nicolecimbura]

Check here to see if your Senator is supporting #ACT4ALS, #S1813 … if not reach out and ask why?

[Ali Schoos, PT @PTAli1]

Washington has 11 ALS Clinic(s), 19 DoD sites, and 510,709 Veterans. There are 47,521 post-Gulf War Veterans, which are at 4x to 10x risk of ALS. Will you support #S1813 #Act4ALS? @PattyMurray ?
@SenatorCantwell ? I'm available to discuss.

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Oklahomans are grateful to Senator @JimInhofe for sponsoring #S1813 the #ACTforALS. As the Ranking Member of Senate Armed Services Committee, his support also helps #Veterans w #ALS who have up to 10x risk of ALS, including the pilots at #AltusAFB

@MilitaryTimes @AirForceTimes

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Met w Tom Pfeiffer of @SenToomey's office today re #S1813 & #NurOwn. As Ranking Member of Senate ALZ Caucus, his staff understood neurodegenerative diseases & had some of most relevant questions we've had in 100s of meetings re #ALS

We need @PatToomey's leadership!
#ActforALS

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

My heart breaks for Lori. She lost both her twin girls to #ALS. Their memory inspires the community, but the FDA can help keep their legacy alive.

@RepAnnaEshoo @rosadelauro @janschakowsky @RepKimSchrier @RepLoriTrahan @RepFletcher @PeterWelch @RepKathleenRice @RepAnnieKuster

[Patricia Manhardt @PatriciaManhar1]

Drop foot in left worse than rt.Legs wasted.Can’t walk w/o help.Left hand like skeleton.Rt hand & left forearm wasting.Weak core.W/o your help @senrobportman @SenSherrodBrown I will have to stop working & go on social security. Medicare or Medicaid. Day 20 begging for our lives.

[TheRealCathyS @CathyStandish]

She is faith, hope and courage. My friend Robin Ramos. Always there with an encouraging word, a sunny smile and a message of hope.

#ALS hasn’t shaken Robin’s faith. It has deepened it.

Robin is dying. Waiting for the cure.

Every moment.

Robin’s light matters.

#Monday

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

WOW. Zoom calls w 32 yo Josh & his mom @Smithstrongmom1 since last summer. Zoomed this morning & his voice is sooooo much improved!

What's changed?
Josh just got his 3rd & last dose of #NurOwn #EAP
FDA must approve NurOwn NOW!

#LivingProof #NurOwnWorks
@SenToomey @PatToomey

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Thank you @SenBlumenthal for sponsoring #S1813 to give Alex & 30k Americans the same access to drugs in clinical trials that cancer patients get via FDA's #ExpandedAccess program

Your support gives them a chance to have more years of their one of a kind love!

#DrugsinBodies

[Shah Minokadeh, M.D. @MinoShah]

Please join the 315 bipartisan House #ACTforALS cosponsors.
Cosponsor Senate companion bill, S.1813.

@GOPHELP @HELPCmteDems @PattyMurray @SenatorBurr @SenBobCasey @SenatorTimScott @MittRomney @SenatorLujan @SenTinaSmith @SenatorHassan @TimKaine @ChrisMurphyCT @SenatorBaldwin

[Shah Minokadeh, M.D. @MinoShah]

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

@PattyMurray @SenatorCantwell, Kristen & her loved ones are constituents & are asking for your support.

Cosponsor lifesaving bipartisan #ACTforALS, S.1813.

@SteveGleason

[Shah Minokadeh, M.D. @MinoShah]

If you're wondering where the @alsassociation leadership is while we're fighting for our lives every second of every day, the answer is the same as it has been for years... Nowhere to be found.

#AbandonedByALSA #AllTalkNoACTION

#NurownWorks #ACTforALS #PromisingPathwayAct

[Shah Minokadeh, M.D. @MinoShah]

"YOU HAVE POWER! Your power is your voice! Your voice is writing a letter, making a phone call,..."

"This president and this congress have got to know that this is a priority."
#EndALS

I hope legendary AIDS activist Larry Kramer inspires you too.
https://t.co/IVQ4nTIqns

[Shah Minokadeh, M.D. @MinoShah]

Roberto with #ALS moving hand for 1st time in 18 mos after ONLY 3 doses of #NurOwn in #ExpandedAccess.

Finger function would allow me mouse clicking on computer & control of wheelchair. What would more treatment do?

@SenBillCassidy @SenJohnKennedy, tell @FDACBER #ApproveNurown

[Shah Minokadeh, M.D. @MinoShah]

Thank you @RepMikeQuigley @JeffFortenberry @ChrisCoons @lisamurkowski. 🙏♥️

You've brought hope and are driving change with the needed urgency that will save countess families the extreme suffering and devastation of #ALS. #ALSchampions