Pronouns: She/Her/Hers Accepting Social Responsibility through truth & justice. Living with ALS since January 2020
Suffolk, VA
Joined April 2009
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- Following524
- Followers1.6K
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Brenda retweeted
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
Brenda retweeted
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
This Post is from a suspended account. Learn more
Brenda retweeted
Legalize marijuana. Expunge past marijuana convictions. End the failed War on Drugs.
Brenda retweeted
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!
grants.nih.gov/grants/guide/…
@bsw5020 @als_now @LisaLegacy4ALS @stevens_nation
Brenda retweeted
RT if you’re ready for Congress to take action to lower the cost of prescription drugs.
Brenda retweeted
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
Connie Becker knows about Familial ALS all too well....and she's ready to end it alongside other amazing advocates.
"I used to think about the future and how #ALS would look for me, based on the rest of my family."
Read on: bit.ly/3DLBI5t
#FamilialALS #FamilialFriday
.@Etsy: Cancel the fee increase. Work with sellers, not against us! Join the campaign: coworker.org/petitions/cance… via @teamcoworker
Brenda retweeted
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 retweeted
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
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?
(4/5) We need you to share your perspectives with the FDA and industry. Click here to submit written responses or record a video: bit.ly/FDAALS Please note that we cannot share stories left as comments on this post.
i have this too
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.
Brenda retweeted
Mom with aggressive ALS hopes to see sons graduate, asks drug company for help
on.today.com/3fd0Q9k
Brenda retweeted
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
odds are...
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 - iamals.org
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
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
LOVE YOU @Ilhan
BIG thanks to @Ilhan for caring about people with Amyotrophic Lateral Sclerosis (ALS) and joining the ALS Caucus. @LoriLarHeller @iamalsorg. Come join us @RepFischbach, @RepHagedorn & @SenAmyKlobuchar. We need you to sweep the state!!!
