Fierce Freespirit fighting for ALS freedom & ALS rights "We’re simply asking for a fighting chance to live the lives that we were meant to live" #ALSLivesMatter
San Jose, CA
Joined October 2019
- Tweets1.9K
- Following1.4K
- Followers1.3K
- Likes613
Pinned Tweet
A great leader is gifted with mental fortitude & grace; add
a sharp intelligent mind & a compassionate heart = @RepAnnaEshoo 🇺🇸
In the dark world of #ALS she is a bright fiery torch who brought Vision,Warmth & #ALSHope back into our lives.
#EndALS #ALSChange
@AislingMcDL
Not only did @RepAnnaEshoo visit…. She spent TIME with us – real quality time talking about #ALS and life in general… family stuff💙 There were no cameras or agendas.
She has so much love, compassion & fierce dedication for ALL people,R/L🇺🇸 She is a fiery inspiration🔥 #EndALS
Lack of urgency would change if researchers & regulators spent 24 hrs visiting people w #ALS
▪️ @RepAnnaEshoo visited @JamieRoseBerryy
▪️ On ALSOne, Dr James Berry encouraged neuros to do it.
It changes how you view the urgency, devastation & priorities.
#ENDALS #DyingWaiting
My words & emotions speak for the Warriors b4 us, the Warriors fighting today –& probably for future #ALSWarriors to come –unless EVERYONE suffering from #ALS , RISES UP & DEMANDS BETTER.
Death Row sees more humanity & dignity than we will ever fucking see. THIS IS FAR FROM OK.
. @JamieRoseBerryy wrote this poem, #Hurricane #ALS
"The world spun around me as my heaven became hell"
Please watch Jamie's videos to follow this warrior's fight for her life vs the inhumanity of being denied access to promising drugs
youtu.be/_GdUZbWzDcg
#EndALS
We have suffered through unimaginable loss and pain, as our bodies are unplugged –bit by bit. Every loss takes a massive chunk from our souls, that we can't get back. It does not have to be this way. YOU @DrCaliff_FDA & @US_FDA can do better. SO JUST DO IT.#EndALS #ALSHumanity
So many pals popped into my head when I wrote this…1 who just had a birthday & I never said HBD! Several versus were inspired by ALS niece @SarahNauser 🎈🎈💪🏼💪🏼#ThroatPunchALS … with a smile😊
I wrote a poem that is not angry… and I dedicate it to you… and you… and you…… and…✨✨
#EndALS #ALSsuperstars #ALSPoetry
I wrote a poem that is not angry… and I dedicate it to you… and you… and you…… and…✨✨
#EndALS #ALSsuperstars #ALSPoetry
Derek @derekgunz is a bad ass. A great father, husband & friend to everyone in the #ALS world. Today,i raise my glass in his honor. #EndALS
I just received this bit of joy in the mail✨✨@RepAnnaEshoo is an inspiration and a source of HOPE to her constituents, and to the entire Country.🇺🇸 In the war against #ALS we are thankful to have this amazing, beautiful, fierce, true-to-her-word, warrior, on our side.💪🏼#EndALS
I highly recommend subscribing to Scott's blog! It is the real deal… no BS. A Word Warrior, wielding wit and wisdom, while waging war against a common enemy:#ALS
"Chapter 30: In Sickness and in Health" has been published on the #FlexOnALS #blog! Link in profile.
‘Marriage is challenging enough without the "in sickness" being tacked onto it. So it should not catch you unawares to hear that our marriage has been pushed to the brink…"
JamieRoseBerryy retweeted
Dear @US_FDA,
Yesterday, 17 Americans passed away from ALS. To you, they are statistics. To the rest of the world, they are our friends and our family.
One of those who left us yesterday was @sandymorris333. You know her because she met with you twice since 2019.
JamieRoseBerryy retweeted
I can’t stop thinking about the void that the passing of @sandymorris333 has created. For the first time since I was diagnosed with #ALS, she’s not here on Earth to be our rock. Selflessly, I’m 💔 for her family. Selfishly, I’m scared to lose a real game changer.
JamieRoseBerryy retweeted
Missing Sandy’s daily tweets @sandymorris333. Twitterverse doesn’t feel the same. My day doesn’t feel the same. Can you imagine how her kids and husband feel? @US_FDA you could have done more. You failed her. #EndALS #diedwaiting – at Georgia, USA
. @BrainstormCell The ALS community appreciates all that you do! #NurOwn could give me Alex Kade & Matt & EVERYONE with #ALS a #FightingChance to live the lives that we were meant to live. That's all we want…no more, no less. Thank you for bringing us one step closer #EndALS
My Girl. Thank you @cylebo @MaryKayTurner1 @ralph_kern @StacyLindborg @BrainstormCell for not giving up. I hope my daughter gets the chance. #NurOwn #ALS @statnews. #livingproof. @RepAnnaEshoo @RepSchakowsky @JamieRoseBerryy @klink52 @kandysimons @als_mama @aVoice4ALS
I'll volunteered to strip it clean inside, paint the walls, clean the floors & give the outside a fresh coat of paint with the big sprayer. J volunteered to trailer it up to the people who lost their homes in the California fires. I bit off more than I could chew!
JamieRoseBerryy retweeted
"In a review of FDA centers’ use of the accelerated approval process between 7/2008 & 12/2017, two-thirds of drugs approved this way were for cancer, & JUST ONE represented treatment for a neurologic/muscular disorder. I find that shocking!" #ALS #Nurown
statnews.com/2022/08/16/fda-…
ALT FDA regulatory RIGIDITY is killing countless generations of ALS patients and devastating families and loved ones.
Thank you not giving up on us💙@BrainstormCell @Cylebo @MaryKayTurner1 💙#endALS #NurOwn #BreakingNews
🎉BREAKING NEWS:
@BrainstormCell announces it will file a BLA seeking FDA approval of #NurOwn for #ALS.
⬇️See Press Release for other promising news!
ir.brainstorm-cell.com/2022-…
#NurOwnWorks #neurology #neurologists #motorneuron #musculardystrophy #MND
#MedTwitter #NeuroTwitter
A fellow pAL asked if there are other storytellers out there –to spread the word about Life with #ALS thank you for the motivation to pick up the "pen" – @ScottFightsALS berrystrong.org/blog/f/26-le…
I had faith #NurOwn would help us, so I FOUGHT
11/2020 My1st Fight-for-NurOwn News piece
5/2022 My 6th ""
Even as ALS paralyzed me,@BrainstormCell @Cylebo –I never gave up on you.
Please reciprocate & file The BLA
#DyingWaiting #EveryPointMatters #WhateverItTakes #ALS
If a drug/biologic is proven to be safe, & had a clinically meaningful response in even a small group of pALS –there should be no delay, no reviews & no question on making it accessible to people with #ALS ASAP
#ALSHumanity #AccessforALS #NurOwn @DrCaliff_FDA @RepAnnaEshoo @POTUS
