Brenda

Pronouns: She/Her/Hers
Accepting Social Responsibility through truth & justice.
Living with ALS since January 2020

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

@sandymorris333 @califf001 @FDACDERDirector Wish every decisionmaker w @FDA could spend 24 hrs with @Sandymorris333 & others w #ALS so they could better understand risk-benefit & what a clinically meaningful change is to someone fighting every single day for their life.

@DrCaliff_FDA @CBER @FDACDERDirector @DrWoodcockFDA

[Sandy Morris @sandymorris333]

I will again extend my genuine invitation to a day at my home. You can watch what it takes to keep me alive
If you're careful, I'll let you feed me. I can show you a few tricks on my tobii
Just 1 day @califf001 @FDACDERDirector I promise you'll make more balanced decisions in ALS

[Bernie Sanders @BernieSanders]

Legalize marijuana. Expunge past marijuana convictions. End the failed War on Drugs.

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Great news! @NIH has set up the #ACTforALS funding!
First application date: June 9th

Thank you @RepMikeQuigley @rosadelauro @ChrisCoons @lisamurkowski @RepAnnaEshoo for all you did to make this happen!

https://t.co/oyXr0QEHTO

@bsw5020 @als_now @LisaLegacy4ALS @stevens_nation

[Brenda @BSwanntastic]

its not on you... #pals #als #MND @bswanntastic https://t.co/AmVE305Obf

[Senator Amy Klobuchar @SenAmyKlobuchar]

RT if you’re ready for Congress to take action to lower the cost of prescription drugs.

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

20 missing seats at the table
20 horrific deaths

If your family had a chance to slow ALS progression in "some," would you exercise regulatory flexibility?

We do it for oncology, why not #ALS?

@DrCaliff_FDA @FDACDERDirector @FDACBER
@POTUS @FLOTUS @VP @SecBecerra @RepAnnaEshoo

[Brenda @BSwanntastic]

empathy is not endorsement...

we are all humans who deserve to feel safe.

[Brenda @BSwanntastic]

.@Etsy: Cancel the fee increase. Work with sellers, not against us! Join the campaign: https://t.co/BBL5QPzUlt via @teamcoworker

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Thanks to @RepSaraJacobs (D-CA) for standing up for #veterans & Californians w #ALS by sponsoring the #ACTforALS. This disease is devastating families & your support is giving them real hope at accessing drugs that can change lives!

#HR3537 @MilitaryTimes
@SDUT @als_now

[Brenda @BSwanntastic]

@ArthurCaplan @statnews Aren’t you just the Savior! Let people suffering just #diewaiting because it’s otherwise way too risky to try anything that might help. Thank you so much! I don’t know what I would have done without you! Oh that’s right… SUFFER UNTIL DEATH!

[Mark bedwell AlS @Markbedwell11]

@alsassociation We have already been telling them our perspective and also you. You have blocked pals and you are trying to silence us. You are all talk talk talk talk talk talk and no action. You will not silence us no more

[Brenda @BSwanntastic]

Seriously? You set obstacles in front of people suffering who may not have the equipment or help to submit a written response or video? What the hell kind of help do you actually provide?

[The ALS Association @alsassociation]

(4/5) We need you to share your perspectives with the FDA and industry. Click here to submit written responses or record a video: https://t.co/bX3YZgDpuw Please note that we cannot share stories left as comments on this post.

[Brenda @BSwanntastic]

@alsassociation why not

[Brenda @BSwanntastic]

i have this too

[Scott Smith @ScottFightsALS]

Many persons with #ALS (#pALS) receive a strange byproduct known as #pseudobulbaraffect. It makes it difficult to control emotions.

This morning while holding my daughter Hope, my PBA was triggered. One little thought of “will I be there when she grows up?” And boom. I’m done.

[TODAY @TODAYshow]

Mom with aggressive ALS hopes to see sons graduate, asks drug company for help
https://t.co/SbEcBAnlmT

[JamieRoseBerryy @JamieRoseBerryy]

Congress must hold #ALShearings to demand @US_FDA FIX ALS before many more die @biospace #Alsa #endals @WSJopinion #NUROWN @DrWoodcockFDA #DRUGSINBODIES
@SecBecerra @statnews @POTUS
@PattyMurray @HHS_ASH
@SenatorBurr @FrankPallone
@cathymcmorris @RepAnnaEshoo
@brettguthrie

[Brenda @BSwanntastic]

odds are...

[I AM ALS @iamalsorg]

Everyone should care about finding cures for #ALS because it can affect anyone. We're here to provide support and resources for those impacted by this disease, as a person living with it, loved one or advocate. Learn more - https://t.co/intx6kLlxS

[Brenda @BSwanntastic]

450,000 around world are #DyingWaiting, counting on US to lead the fight vs #ALS #MND
FDA #RedTape blocks access to drugs helping "some" regain function

#ALSHearings
@RepAnnaEshoo

@rosadelauro

@cathymcmorris

@SpeakerPelosi

@SenSchumer

@RepGuthrie

@POTUS

@VP

[sandra castillo cano @sandrac37082124]

Europe,LatinAmerica & the WORLD FIGTH AGAINST ALS support the US #pALS.This is how we all feel
#REDTAPE #ALShearings @US_FDA @biospace @WSJopinion @DrWoodcockFDA @SecBecerra
@PattyMurray @SenatorBurr @FrankPallone
@cathymcmorris @RepAnnaEshoo @brettguthrie

[Brenda @BSwanntastic]

THANK YOU

[Governor Mike Braun @GovBraun]

Those struggling with ALS need us to be their advocates.

That's why I'll be reintroducing my Promising Pathway Act, a legislative solution to give those struggling with life-threatening illnesses like ALS a fighting chance to receive access to timely, meaningful treatments.