pRex @SeriousVein
NYC Joined March 2014-
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.#ALS #ADVOCACY #ALSADVOCACY #PUBLICITY #MEDIA The. Work.
.@iamalsorg #awareness #als How "awareness" gets done:
CRITICAL ALERT This is a recall of all microphones obtained after 2007 due to defective users.
.#SurpriseSurprise #ALS #Amylyx #Bandwagon #BlindDesperation ~ The origin. ~
This is an important point. Now that our elusive "patient representative" is public & seeking donations, perhaps Mr. Buckley could step forward & share his process of recruitment into the "voice of the community" position. Help Andy Buckley Manage His ALS Journey:…
This is an important point. Now that our elusive "patient representative" is public & seeking donations, perhaps Mr. Buckley could step forward & share his process of recruitment into the "voice of the community" position. Help Andy Buckley Manage His ALS Journey:…
Have we got you on the run, Bobby boy? Sept 27 is going to come back to haunt you no matter how much you flap your yap about reform. Fraud carries consequences; evidence is now in the hands of E&C commission and reporters. Y'see we got nothin' to lose. You already killed us. #als
Have we got you on the run, Bobby boy? Sept 27 is going to come back to haunt you no matter how much you flap your yap about reform. Fraud carries consequences; evidence is now in the hands of E&C commission and reporters. Y'see we got nothin' to lose. You already killed us. #als https://t.co/4Oq7OVzmpC
Couple summers ago, 8 House Reps signed a letter to FDA Ringleader Califf about the state of flexibility for ALS treatments. (excerpt only in image) "Just waiting to hear back." OVER 9000 DEAD IN THE INTERIM. Eight congressional lawmakers can't compel a response from the FDA…
~ Seriously. Imagine you're this person. Let's say you DO actually have ALS and the headrest wasn't a prop. When your day comes up, how would you like to be remembered? ~
~ Gooood Monday morning fellow bullied, abandoned, terminally ill superstars! Let's kick off the week with THE ELEPHANT IN THE ROOM! FDA EXPLAIN YOURSELVES! ALS ASS'N EXPLAIN YOURSELVES! 🔽 WHO. IS. THIS. PERSON? 🔽 A "voice of the community" who speaks AGAINST the the…
~ "Not only have the drug companies spent over $4.5 billion on lobbying and hundreds of millions of dollars in campaign contributions over the past 20 years, they also have created a revolving door between the FDA and the industry. Shockingly, nine out of the last ten FDA…
THIS 🔽 is the tip of the spear, the core issue, the pressing need. The MOST PERTINENT concerns of PWALS are posted by INDIVIDUALS, while ADVOCACY is AWOL; COWARDLY and ADDICTED to pathological platitudinous narcissism. We need MAINSTREAM PRESS and CONGRESS to achieve…
THIS 🔽 is the tip of the spear, the core issue, the pressing need. The MOST PERTINENT concerns of PWALS are posted by INDIVIDUALS, while ADVOCACY is AWOL; COWARDLY and ADDICTED to pathological platitudinous narcissism. We need MAINSTREAM PRESS and CONGRESS to achieve…
~ Legacy Wednesday ~ @US_FDA @FDACBER #ALS #DyingWaiting
~ So then. The question remains WHY. (Not a data-related question, but really, thanks🥱) ....................................................................................................... 1. Brainstorm is an Israeli company, the CEO is an Orthodox Jew and FDA principals are…
~ Imagine we had a regulatory agency that approved treatments on the basis of Safety and Efficacy. 😲 Called FTFDA? ~ #ALS #NurOwn #NurOwnWorks #DyingWaiting @FDACBER @US_FDA @HHSGov @selenagomez #HellWhyNot?
MieshaDunston @MieshaD40803
13 Followers 812 Following
Caitlin Wolfley @WolflCaitli
52 Followers 5K Following
Avelina Burgbacher @BurgbacAveli
15 Followers 3K Following
Camila Rueda @camila_rue
39 Followers 5K Following
Alberta 💋 @Alberta_S71
6 Followers 486 Following Irrеsistiblе nymрhomаniаc соnsumed bу insatiable dеsirе
Roxanne Roberrtson @RoxanneR44483
32 Followers 5K Following
Kenzie Rudeen @kenzi_rude
58 Followers 5K Following
alsHATER @HaterAlss
29 Followers 201 Following
Adelynn Bronder @AdelyBronde
32 Followers 4K Following
Esther Peter$BUBBLE,$.. @EstherPete41848
127 Followers 228 Following
Joanne @didyegethealed
93 Followers 986 Following
AnneeK @anneek10s
375 Followers 457 Following God is bigger than #ALS, dx in 2022, Married to the love of my life, Mom and Grammy, Golden retriever lover #bourbonlover #FightlikeAGirl #ALS #ALSWarrior
Deb Bellina @BellinaDeb
98 Followers 151 Following Lean Six Sigma Black Belt. Matt’s mom, advocating for people living with ALS today and people who will be diagnosed tomorrow, and the next day, and the next
bonejack @bonejack_eth
718 Followers 1K Following
Hani Nadhir @NadhirHani5226
10 Followers 164 Following
Kathy @Kathy7483672148
108 Followers 435 Following Married to the love of my life who is dying from 100% Fatal ALS,mama, grandmama, full time caregiver. Counting everyday with my hubby as a blessing. #ALSsucks
Ashlee @lane5ashlee
526 Followers 3K Following
Pablo Pedro Burad Jau.. @BuradJauregui
1 Followers 21 Following
Rain Consulting Group @RainConsulting
221 Followers 48 Following MPS Scholar in Transformation Leadership & Fierce Advocate for Neurological Diseases.
Christina Jewett @By_CJewett
9K Followers 8K Following New York Times reporter covering all things F.D.A. with an eye on intersection of malady & money. Tips? DMs open & ask for Signal.
Rainer62ALS @crossfitcincinn
307 Followers 200 Following
Jim Florentine @Mrjimflorentine
169K Followers 619 Following Podcast called Everybody Is Awful. Radio show on Ozzys Boneyard SiriusXM. I tell dick jokes in comedy clubs. New Terrorizing Telemarketers Vol. 7 out Sept. 16.
Vita Kalinsky @Vita_Victoria2
46 Followers 30 Following
Lu Murru @MurruLu71671
14 Followers 74 Following Lost sister to the monster that is ALS. Praying for a cure soon to end this unrelenting disease.
SeanBoss @Humbl4now
201 Followers 475 Following Mostly here just to follow stocks and news. Also quickly becoming a passionate ALS advocate. Google Nurown - Approval needed ASAP along with more treatments.
Ali Schoos, PT @PTAli1
1K Followers 1K Following Primary Care PT 4 Health&Fitness/Outdoor Lover/ Biz owner/ Alzheimer's advocate-1 red wine-a-day/ALS Mama Bear advocate (dammit) #ChoosePT
Tom Fitz 👨🏻�.. @_wobblewobble
516 Followers 427 Following I’m just a guy fighting ALS the best I can, tweeting about all things programming 👨💻and my toddler 👼
Craig Reagan @CraigReagan2
717 Followers 419 Following Aggie. Texan. Entrepreneur. ALS Advocate living with ALS.
Hungry Garden @hungrygarden
921 Followers 1K Following
BridgetRebecca @BridgetRebecca4
843 Followers 664 Following Momma bear 🐻 fighting for ALS treatments and a cure #Andrewsstrong
Lorri Cavaliere @LorriCav
1K Followers 4K Following A mom in CT, fighting and advocating every day for the life of my 32-year old daughter, Alexandra, diagnosed with sporadic bulbar-onset ALS in July of 2020.
Gary Godfrey @GaryGodfrey25
798 Followers 854 Following Working hard to LIVE with ALS. Trying to Make Each Day My Best Day. Former Auburn Basketball player. #maketodayyourbestday #EndALS
Alon Ben-Noon @NoonAlon
1K Followers 3K Following Leading NeuroSense Therapeutics (Nasdaq: $NRSN), a Clinical stage Biotech company, accelerating therapies for ALS and Neurodegenerative diseases.
minna @minnadillard
948 Followers 3K Following I lost my loving husband to ALS in 2016. I'm fighting for treatments that should have been available to him and NOW should be available to ALL ALS warriors.
Annals of Laboratory .. @AnnLabMed
2K Followers 5K Following Annals of Laboratory Medicine, published by Korean Society for #Laboratory_Medicine #open_access_publishing #annlabmed
Phil Green @pjgreen
3K Followers 1K Following Father to 4. Husband to 1. Right-brained.. 2x Rose Bowler. 1x Nat'l Champ. ALS Advocate. PLWALS. Type with my eyes.. #PurpleReign #NoWhiteFlags #NotTodayALS
AZsuze @AZsuzeSoAZ
1K Followers 5K Following #NavalnayaNavalnyBrave🤍 The education our Healthcare experts must complete, #mustnot be sabotoged by evil GOP politicians fundraising off avoidable suffering.
@hart_thom @hart_thom
352 Followers 582 Following Health advocacy. #EndALS Raise #mentalhealth awareness. #FightStigma, be kind to each other. @wittenberg @MiamiLawSchool alum. Views entirely my own. He/him.
アラフォーALS @ALS7693636895
1K Followers 5K Following 2023年にALS（筋萎縮性側索硬化症）という難病の確定診断を受けました。同じ病気を持つ方々や、難病、障がいをお持ちの当事者及び支援者へ向けて、色々と発信していこうと考えています。
Nick Ziogas, MD @NickZiogasMD
412 Followers 3K Following Physician-Scientist (@JohnsHopkins alum). Neuroscience Clinical Development Leader (@BMSnews). ex-@Biogen. Biotech Innovator.
Deb Bellina @BellinaDeb
98 Followers 151 Following Lean Six Sigma Black Belt. Matt’s mom, advocating for people living with ALS today and people who will be diagnosed tomorrow, and the next day, and the next
ALS News today @alsnewstoday
2K Followers 44 Following We are dedicated to sharing the latest news, research, and Amyotrophic lateral sclerosis (ALS) patient perspectives.
Tavares Speer @TavaresSpeer
443 Followers 204 Following Husband, Dog Dad, Former Business Analyst & FSU Alum. I was dx w/ #als 10/4/18. Still fighting. #alsfighter #alsawareness #Endals
Whitney Webb @_whitneywebb
350K Followers 964 Following Contributing editor of https://t.co/i6XvCQ62PW, author of One Nation Under Blackmail. Follow me on Nostr + other Twitter alternatives (see link tree below)
Farmstrong @farmstronginfo
1K Followers 4K Following Foodie, #wine-y, fan of good UX & #techcomm. Together we can save my husband & hundreds of thousands w/ #ALS. #EsriMaps #DyingWaiting #BLM #LGBTQIA #mirfanda
Rainer62ALS @crossfitcincinn
307 Followers 200 Following
Sheree Paolello WLWT @ShereeWLWT
32K Followers 3K Following Cincinnati girl💗Mom💗Animal Lover💗News Junkie💗Emmy & Edward R. Murrow award winning Anchor📺 Links/RTs aren’t endorsements. Opinions are my own.
SeanBoss @Humbl4now
201 Followers 475 Following Mostly here just to follow stocks and news. Also quickly becoming a passionate ALS advocate. Google Nurown - Approval needed ASAP along with more treatments.
Ken M @kjmark
138 Followers 689 Following Chiefs, Yankees and golf fan. Hoping ALS patients get access to needed treatments.
Mandi @RunningMama0522
2K Followers 1K Following
Matthew Perrone @AP_FDAwriter
7K Followers 3K Following AP Health Writer covering the intersection the medicine, money and public policy. Sends tips, docs anonymously: https://t.co/C5bVjIYY3U
Rain Consulting Group @RainConsulting
221 Followers 48 Following MPS Scholar in Transformation Leadership & Fierce Advocate for Neurological Diseases.
Lorri Cavaliere @LorriCav
1K Followers 4K Following A mom in CT, fighting and advocating every day for the life of my 32-year old daughter, Alexandra, diagnosed with sporadic bulbar-onset ALS in July of 2020.
Craig Reagan @CraigReagan2
717 Followers 419 Following Aggie. Texan. Entrepreneur. ALS Advocate living with ALS.
Vita Kalinsky @Vita_Victoria2
46 Followers 30 Following
Sydney Lupkin @slupkin
5K Followers 5K Following Correspondent at @NPRScience. Past: @KFFHealthNews, @VICENews, @MedPageToday, @ABC // DM for Signal
Katherine Ellen Foley.. @katherineefoley
8K Followers 2K Following director of media for @smokefreefnd | katherine dot foley at smokefreeworld dot org | my views | previously @politico and @qz | tell your cats I say 'pspsps'
Patricia Manhardt @PatriciaManhar1
549 Followers 308 Following Begging for the lives of people with ALS. Praying that those who should be fighting with this community will join us. #NurOwnWorks
Matthew Bellina @BellinaMatthew
82 Followers 21 Following 39 year old husband and father of three. Former Naval Aviator living with ALS
ALS Uncensored 🏴�.. @ScottsFight
2K Followers 1K Following Scott Craig. ALS Uncensored podcast. Digital Artist. AI Student. Typing with my eyes. Living Impossible! #ALSUncensored #ALS #EyeGazeArtist #AI
Phil Green @pjgreen
3K Followers 1K Following Father to 4. Husband to 1. Right-brained.. 2x Rose Bowler. 1x Nat'l Champ. ALS Advocate. PLWALS. Type with my eyes.. #PurpleReign #NoWhiteFlags #NotTodayALS
BrainStorm @BrainstormCell
5K Followers 777 Following BrainStorm Cell Therapeutics, Inc. (NASDAQ: BCLI) is a clinical-stage biotechnology company developing autologous cell therapies for neurodegenerative diseases.
Seth Poling @SethPoling10
5K Followers 392 Following Wild & Wonderful WV. FSU grad. Married to @erika_poling , Father to Liam & Bayler, ALS Warrior & advocate. #EndALS Founder of @project_seth
Maceo Carter @MaceoCarter
932 Followers 553 Following Father, Husband, UNC Tarheels Fan, Sibling, Living with ALS. #MelanatedpALS&cALS
Thurman @ThurmanTough
610 Followers 458 Following ALS made me realize how tough I really am and who your friends really are..
Nate Methot @a_life_derailed
2K Followers 777 Following Author of "A Life Derailed: My Journey with ALS", a memoir 39 y/o living with #ALS since 2011. #EndALS #empathy #awareness Memoir and blog at https://t.co/lSqWxLqUXm
gina Gibson @ginaGib68993499
106 Followers 87 Following
Anthony Carbajal @carbajalphoto
14K Followers 3K Following
Gary Godfrey @GaryGodfrey25
798 Followers 854 Following Working hard to LIVE with ALS. Trying to Make Each Day My Best Day. Former Auburn Basketball player. #maketodayyourbestday #EndALS
Nicole Cimbura @nicolecimbura
1K Followers 2K Following
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 909 Following Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for change for ALS.
axeALSFoundation @stevens_nation
4K Followers 634 Following On a mission to #axeALS Instagram: @teamstevensnation Facebook Group: Team Stevens Nation
Xcxx @lorrielinn
447 Followers 460 Following
ALS ACCESS @brainmatters10
2K Followers 2K Following Fighting for a cure for ALS/MND/ and it’s variants. Fighting daily for many years, for ALS drug access. Sod1 Gene carrier.
Corey Polen 🧑🏽�.. @CoreyPolen
2K Followers 227 Following Very Blessed husband and father. Rolling w/ #ALS. #LetItBe #PromisingPathwayAct @venmo: ALSfund Tweets expire. Get'em while hot. (King/My Royal Majesty)
Jean C9orf72 @Jeanc9orf72
1K Followers 860 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
ALS Advocacy @alsadvocacy
12K Followers 2K Following ALS = Lou Gehrig's Disease Thought it had been cured by now? Still no known cause. Still no cure. Still no treatment. Still quickly fatal. Still outrageous.
Team Gleason @TeamGleason
6K Followers 495 Following Nonprofit founded by former New Orleans Saints player, @SteveGleason, after his diagnosis with Amyotrophic Lateral Sclerosis (ALS) in 2011. NO WHITE FLAGS
. Josh__/_Swerve__End.. @SwerveALS
270 Followers 330 Following . VR & Screen Experiences. Therapeutic Dawn. Info: https://t.co/HsedAR2lPU / Josh * Website is for laptops, not phones - Yes @IamALSorg @ALSAction
alsHATER @HaterAls
1K Followers 968 Following als hater MM lover Impossible is an option One woman army
Derek Koval @derekgunz
3K Followers 273 Following Husband. Father to 2 boys 1 girl and 2 angels. fighting ALS and RP Blessed by those around me.
frenchsan @audiostarfleet
487 Followers 1K Following
Adam Feuerstein ✡�.. @adamfeuerstein
114K Followers 750 Following Reporter @statnews. The Harry Kane of biotech. Dog ❤️er. Polk Award winner. #COYS. Said one analyst: The likes of Adam Feuerstein attack viciously..@FDACBER @DrCaliff_FDA #Nurown was stolen from #ALS 2024
@brainmatters10 I lost my dear aunt to ALS. I know that our family would have done anything to help her, but at the time there were no treatments. It seems to me that if there is a medication, whether in clinical trial or not, compassionate use should allow ALS patients access to it. Just cruel.
My sadness & anger at the politics in #ALS that made neurologists, orgs, & fake "ALS advocates" like @alsadvocacy show up in full support of Amylyx, which had NOT EVEN 1 patient-reported outcome that rivaled the MANY with #Nurown. If you went silent or are healthy & actively…
4/ 🚨 Speculation: since gastro and explosive diarrhea are side effects (visit the FB groups), aggravation of the gut implies the ~9% more NfL in the P3 #AMX0035 trial means this isn't happening with TUDCA alone. BTW: did anybody consider the effect of diarrhea- without arms?
The #ALS community looks forward to seeing what you bring to the fight to #EndALS, @sheri_strahl. We have heard many failed #ALS leaders, like Calaneet Balas, say similar things. There is a huge void in EFFECTIVE ALS leadership and I hope you will step up & move #ALS forward…
I'm deeply honored and energized to lead the ALS Network @youralsnetwork! I look forward to continuing this interconnected journey where commitment to excellence, discovery, and people-centric care are the hallmarks of everything we do.
@iamalsorg I encourage you to include the broader community more. There is a horrible lack of leadership in #ALS. Nothing will change anytime soon this way.
@bsw5020 @US_FDA @BrainstormCell You fought a good fight to get an AdCom. Please lead an effort to ask Congress investigate that meeting. ALS patients need results and NurOwn in their bodies NOW, not just the check marks. Thank you!
Almost done with calling all members of Energy and Commerce Committee regarding NurOwn AdCom. Please call them, ask for an investigation, describe the violations taken place. Remember we have NOTHING to loose but our lives and NO ONE will call for us.
With tears flowing… I learn of more and more pALS who actually received NurOwn, my heart breaks over and over and over again. When my daughter was diagnosed with this F**ing monster in 2020, there was so little around that held any promise…aside from NurOwn. I wanted Alex to…
@bsw5020 Everyone knows how many law violations were during Nurown AdCom. You created a powerful group and have many followers. Please encourage people contact E&C committee and ask for a proper investigation of that meeting. We have NOTHING to loose but our lives.
Today’s #ALS field trip will include Costco and the aquarium while being stoned out my mind. Because depression and hopelessness must be confronted, head on, by irresponsible and ridiculously stupid adventures. Probably getting a caramel macchiato put in my tube and binging ice…
@ginaGib68993499 @HaterAls @RepMikeQuigley @POTUS @bsw5020 Let's start the new year with contacting members of Energy and Commerce committee who oversee the FDA, templates are here, on X and on NME facebook page and ask them to investigate that biased AdCom.
@RepMikeQuigley @POTUS @bsw5020 Rep Quigley, when you have been diagnosed with ALS, ‘one day’ is just too far away. I would like the arsenal for fighting ALS to be available NOW not One Day. #NurOwnworks for some and was blocked by biased AdCom. I hope you investigate what happened there. Real people are dying
"Thank you team Gleason for providing an eye level seat, lift for my power wheelchair. I have attached a picture of me going for a walk with my wife after our first snowfall." Kind regards, Kevin O., Lincolnville, ME
@RainConsulting @FDACBER @BrainstormCell That's why EVERYONE needs to contact the Energy and Commerce Committee and ask to investigate the Nurown AdCom. Otherwise, there is NOTHING.
Don’t forget to mention how the #NurOwn decision has impacted patients who were thriving on it! In a landmark 2023 recommendation by @FDACBER it was decided that @BrainstormCell perform a phase 3b with little to no money left which delays a treatment that has helped dying #ALS…
As we approach the end of year, I took a moment to look back at FDA’s contribution to public health over the course of 2023 with @HCPLiveNews. We cover a range of topics including the Human Foods Program, vaccines, AI in health care, and more! Watch here: hcplive.com/view/reviewing…
While you are celebrating, eating and drinking we are on vents and G-tubes rotting in our beds for years till we die. Please let me know what exactly you are celebrating? #NurOwn @alsa failed #NurOwn, ENCALS offered their uneducated opinion on #NurOwn. U failed #ALS community.
Gothenburg (ADPD&champagne), Barcelona (ENCALS&Cava Sangrias), Boston (Target ALS), Basel (MNDA&Fondue), Genoa (team science&Spritzers on the beach), & our new shiny GeoMx. So lucky to be able to be a part of this incredible team of wonderful people. Very excited for 2024 🤩🥰🥂
Focusing on fame & legacy in ALS is foolish. No matter how many movies, books, awards, and celebrity friends you accumulate,... 99.9% of people won't think about you if you die. It's your family & loved ones who will suffer. Fight for them. #ALS advocacy is pathetically weak,…
It’s time to ask the @IntlCrimCourt evaluate to @US_FDA @FDACBER @DrCaliff_FDA @alsassociation for Crimes Against humanity due to selective Genocide to #PLALS Justice as they want to kill us
~ If the FDA were explicitly accused of tampering, collusion and fraud in an Advisory Committee Meeting, it would deny, exonerate itself or even order a cease and desist . Unless it was all true. ✅ Or considered itself above the law. ✅ Oh, Peter, Peter. Allowing ALS deaths…
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