Benjamin Stephens @WayneStephens77
If you ain't tryin you're dying. ALS warrior and advocate! Joined July 2019-
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Check!!! Your fucking move @US_FDA
I hoped for #drugsinmybody I feel like that it was just another letdown in my journey I am fucking tired of being the fool I should have known better You can't beat the fucking "MAN" I want my final wish to be Take my dead body and dump it at the front of the @US_FDA
For the last few months I have let bitterness and anger control my soul Bitter at people who I thought would be there for me And sadly showed me to be wrong I have been struggling with this and the reality of my situation Shit got real when I had to get a trach (1/2)
I think that I might need some professional help.
I have fallen off the ALS wagon and crawled back in the black hole of depression It gets harder and harder to claw my way out I go right back to isolation mode. I don't want to be that person But it is really hard not to in a facility I am going to try to stay out of my head
First time having my eyes dilated since I had the Tobii PSA: Plan on not being able to use it for a while. S/N I have to have 2 shots in my left eye IN MY FREAKING EYE
I would like to know the thought process behind the @US_FDA decision to postpone the decision on AMX0035. It's baffling that a drug already approved and an OTC medicine needs this much thought. I smell BULLSHIT We can't even blame the @alsassociation for this one
As I lay here breathing out of my neck and trying to not drown in my own saliva I can't help but wonder what #Nurown could do for me I will probably never find out thanks to the @alsassociation and the @US_FDA Here's a big fat F&%k You from my heart to yours!!
I wish that I could get my mojo back. It's really frustrating having to fight for everything you should be entitled to. Medicine, Treatments, sufficient health care. I mean why should I have to fight all of that while fighting for my life @US_FDA Can you please answer that for me
I know that we have made progress but when should we expect to see some benefits I feel like that I have been a part of a giant smoke and mirror show I could use any and all suggestions. I can't say that I have heard about any action taken
I am really tired of reading the same narrative about ALS time and time again I know that we as a community has done more for ALS than a lifetime of those before us Yet we are still no where near a treatment or drug I just wanted to at least try something before I go @US_FDA
Apparently people like you and me don't matter to the @US_FDA I have yet to see anything that resembles compassion or common decency. As doctors they took a sworn oath to do everything in their power to help people like you and me. #Hypocrisy #drugsinbodies #NurownWorks
Having trouble with my Tobii the past few days
Spoken like a true champion!!
Maybe the @US_FDA should look at the 6000 flags and be made to read the names of each and every one of the people that they are denying access to I wish someone would take them to the doorstep of the FDA building.
If you can't get behind this then you might as well pull the f&@kin trigger yourself @US_FDA & @alsassociation
If you can't get behind this then you might as well pull the f&@kin trigger yourself @US_FDA & @alsassociation
OK people I kinda went into a dark place for a while I am slowly trying to make my way out I don't really know where I am getting my strength from right now I've been in a downward spiral for what seems like forever I am ready to pick up my ALS sword again @US_FDA BEWARE
I feel like I've lost control of everything. I've never been this closed off. Every time I try to open up I shut down. I know that it's necessary to talk it out, but I can't even get the balls to be honest with myself . I'm losing hope.
I was chatting with someone recently diagnosed with #ALS. Her doctors gave her hope about the promising drugs in the pipeline. My doctor told me nearly the same thing 2.5 years ago. We're overloaded with hope & desperate for action, @DrCaliff_FDA. Please prioritize ALS.🙏 #NurOwn
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure. Co-founder @iamalsorg. Executive Producer @noc_film. All in on curing ALS.
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
Sandra W. Marlowe @sandrawmarlowe
3K Followers 1K Following Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
AZ Latina ☮️🌊�.. @aVoice4ALS
4K Followers 5K Following Political Junkie. Advocate for Enviro Justice, Foster Care, Gun Safety, DEI, Amyloidosis, PD, ALS & Rare Diseases. Love LA Sports. I block disrespectful people.
Shah Minokadeh, M.D. @MinoShah
4K Followers 730 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
Kaye @KayeSteinsapir
120K Followers 37K Following Proud mama of 3. Writer. Attorney. Cancer survivor. Bereaved parent. Founder of the Molly Steinsapir Foundation 🌈🦋✡️. #TEAMMOLLY
ALS TX DAD @AlsDads
2K Followers 894 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
SOD1 EndALS @CEHaddadNP
2K Followers 2K Following #ALS #fALS #SOD1 In the fight to save my family from ALS. Twin mom. Nurse practitioner. grieving daughter - 8/30/22 lost mom #33 in our family
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.
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
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 907 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.
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.
Grant W Smith @GWSmith14
1K Followers 1K Following MUFC ! Proud Husband, Dad and GrandDad. Diagnosed with ALS in October 2020, I battle the BEAST everyday. #ENDALS #ALSLife
Kathy Collier @KathyCo74123384
920 Followers 1K Following ALS Advocate. Proud Mom of an Autistic Son. NEVER Forget Richard my ALS ANGEL.
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
No More Excuses ALS W.. @als_now
4K Followers 1K Following ALS advocate fighting for transparency, access to effective therapies, and ensuring ALS patients aren't victims of weak drug pharma gouging. YT: ALSNewsNow
Smitsonian @Smitsonian_1
127 Followers 376 Following Name is Aaron! Like sharing stuff I think is interesting ALS (Lou Gehrigs Disease) is part of my life not all of it!
Jen Leveque @leveque32408
30 Followers 5K Following
glenn grant @glennggrant
258 Followers 1K Following married to a wonderful lady and father to Lucy the corgi, football and hockey fan(go Habs)...music lover... #ALS warrior
Rozalia Gwinner @GwinnRozal
31 Followers 5K Following
Willy @WillyGrant
4K Followers 5K Following Digital Maven. Married to @GlennGGrant who is battling #ALS. Corgi mom, BBQ, art & books. Punk. KCBS Judge. Born in #YVR. Lives in #YEG #GoodTwitter
Kathy @Kathy7483672148
126 Followers 432 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
Lesley 🇺🇸 🇪�.. @cesarboy17
193 Followers 1K Following "Spread love everywhere you go. Let no one ever come to you without leaving happier." -Mother Teresa
Angie Mia @AngieMia1510146
737 Followers 5K Following
Steve Smith @SteveSm99131516
2 Followers 260 Following Illinois Department of Corrections/Retired. Union Strong, Nature, cycling, Let There Be Rock
All is Well: Lessons @AllsWell333
619 Followers 4K Following “All is Well: Life Lessons from a Preacher’s Father” by Kevin Martin Jr, a story of love and lessons from his dad. All profits to #ALS. #Deacon #CPA
Rose hellen @Rosehel92743270
0 Followers 63 Following
FranD'Ag @fdag2493
12 Followers 471 Following
. Josh__/_Swerve__End.. @SwerveALS
269 Followers 330 Following . VR & Screen Experiences. Therapeutic Dawn. Info: https://t.co/HsedAR2lPU / Josh * Website is for laptops, not phones - Yes @IamALSorg @ALSAction
Hewatt @Lana_n_GA
2 Followers 105 Following
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
Tutor Curtis @CurtisTutor
4 Followers 68 Following Competent writer. For Statistics,Chemistry,Biology,Physics including all sciences Lab Reports, and all academics essays. Gmail;[email protected]
Kasandra Foster @KasaAFoster
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Alice Darwin @Alicedarwin157
155 Followers 421 Following A gentle woman with a lot of self respect and dignity
Sandy Hebert @47sass
49 Followers 308 Following
G. Campos @Guadalu45917345
8 Followers 88 Following
Brittania mattox @BrittaniaMattox
0 Followers 63 Following
Hoops4ALS @hoops4als
402 Followers 262 Following Hoops4ALS is dedicated to uniting college basketball coaches, players, and fans to raise awareness for ALS research and advocacy
The Rigo Gallery @ArtistCmd
81 Followers 281 Following Welcome to my gallery! Just a male Frida Kahlo here; a crippled/disabled Tx man who loves to paint. Portraits & Mexican folklore is what I'm best at.
Deanie Azevedo @Deanie_735
1 Followers 198 Following
Claudia Winkleman @Claudiawinklefx
405 Followers 2K Following 👥| Philanthropist 📈| Professional Trader 🧒💻| Certified Account Manager 🌏| Co-Founder@metatradefx 📍| London Trading Floor 🏦| Stock Market
Sometimes I Shake @shake_sometimes
245 Followers 466 Following feature-length documentary about life, death, love & jazz 🎥🎶 #endALS #parkinsons #sometimesishakemovie directed by @jared_cal, produced by People People Media
Not drinking the Kool.. @Kool_Aid_Free
2K Followers 4K Following Not drinking the Kool Aid about a COURT-CERTIFIED violent, enabled liar, abuser, wife-beater & rapist. There is a mountain of evidence. Open your eyes to see...
LaVonne Roberts @LaVonneRoberts
4K Followers 2K Following Health, Tech & Science Journalist. Forbes 30 Under 30 Tech Reporter. Trustee Scott-Morgan Foundation. ALS Advocate.
Linda Rushton @LindaRushton13
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Wendy Butterfield @Wendy143JMB
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Candy Rich @rich_teatea
121 Followers 381 Following
barrister lucasreid @BLucasreid
250 Followers 679 Following am an Attorney from Czech republic based here in cesena Italy making my professional research on the law practice with a firm via with an estate developer
Captain Mommy @capt_mommy
2K Followers 5K Following Female, Marine Captain, mustang. Showing empathy and surviving this misogynistic gun club, one tweet at a time. Thoughts are my own.
ELO @elopieciepie
19 Followers 737 Following
Laurie Frazier @lfrazier1818
265 Followers 620 Following 3rd generation taxpayer in California, love dogs, my mountain home and nice people
Take Back OC 🏴�.. @back_oc
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Raymond Williams @wheels2017
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Katy Driscoll @KatyDriscoll
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Lisanne Overholt @lisanneover
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Jennifer @96Jsl
45 Followers 232 Following Wife, mom of three, and volunteer. Fan of Watertown hockey, lacrosse and field hockey.
David Gary Wilson @wil_gary
39 Followers 318 Following “Retired.” Coffee and beer connoisseur with more miles on his feet than likely anyone alive or dead.
Eva Uliana @Evieovie
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Anne Eisenberg @EisenbergOith
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Nahum De Leon Marcial @nahum_marcial
30 Followers 2K Following "NAHUM" estoy solo en Swecia y me bloquea Verisure Todo el tiempo +46 798594501 y la compañía de teléfono son muchas detrás de mí todo el tiempo nahum1.del
KUPOCARE @KUPOCARE
631 Followers 2K Following We are passionate about providing innovative mounting solutions to people with disabilities. We offer tutorials on utilizing AI tools to enhance #accessibility.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
Sandra Abrevaya @sabrevaya
21K Followers 4K Following Wife to @bsw5020. Mama to spunky girls. Caregiver. CEO & Co-founder @synapticure. Co-founder @iamalsorg. Executive Producer @noc_film. All in on curing ALS.
Sarah Nauser @SarahNauser
12K Followers 514 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
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
Sandra W. Marlowe @sandrawmarlowe
3K Followers 1K Following Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
AZ Latina ☮️🌊�.. @aVoice4ALS
4K Followers 5K Following Political Junkie. Advocate for Enviro Justice, Foster Care, Gun Safety, DEI, Amyloidosis, PD, ALS & Rare Diseases. Love LA Sports. I block disrespectful people.
I AM ALS @iamalsorg
26K Followers 799 Following I AM ALS is a patient-led movement revolutionizing how to end disease with our sights set squarely on ALS.
Shah Minokadeh, M.D. @MinoShah
4K Followers 730 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
Kaye @KayeSteinsapir
120K Followers 37K Following Proud mama of 3. Writer. Attorney. Cancer survivor. Bereaved parent. Founder of the Molly Steinsapir Foundation 🌈🦋✡️. #TEAMMOLLY
Stew @jonstew1982
2K Followers 193 Following Living with ALS, “If you’re not part of the solution then you are the problem.” Love my wife & kids more than ANYTHING!
Steve Gleason - "Live.. @SteveGleason
199K Followers 247 Following New Instagram - @stevegleasonofficial Dad. Husband. Inspiring all people to live purposefully, despite tragedy. I tweet with my eyes. Embracing ALS.
SOD1 EndALS @CEHaddadNP
2K Followers 2K Following #ALS #fALS #SOD1 In the fight to save my family from ALS. Twin mom. Nurse practitioner. grieving daughter - 8/30/22 lost mom #33 in our family
Mike Harrington @Shankapotomas
3K Followers 928 Following Just a dude with ALS. Not dead yet, though.
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.
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
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 907 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.
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.
Maribeth @MaribethW9007
1K Followers 2K Following Daughter, Mom & my favorite position NANA #billsmafia
Sheri Spain ☮️ @SheriSpain
4K Followers 4K Following Happy when gardening, owned by at least 2 kitties, compulsive reader/learner, elder advocate. Grammy 💙💙💙 #RedSox. #Patriots. #NeverAgain #MeToo🌻💙💛🇺🇦
Nicole Cimbura @nicolecimbura
1K Followers 2K Following
LauraLee✌️🌻�.. @LauraLeeAZ21
13K Followers 13K Following #CatsOfTwitter Followed by Glenn Kirschner, Don Winslow & Jon Cooper. Mom Wife Dog lover. Democracy Matters. 🐕🌈🎾🏓🇺🇲🇺🇲🐱🐕🦺
Suzanne Malveaux @SuzanneMalveaux
101K Followers 13K Following Mom,CEO Malveaux Global Media,Fmr CNN Anchor&White House Correspondent,Marathoner,Triathlete,ALS fighter. My passion:finding peace through storytelling.
Joan Egan @joanegan98101
125 Followers 2K Following Retired, former financial type. Addicted to twitter because I need to be among the first to know that Trump is over.
Carri Steffey @Sodiq93150487
50 Followers 363 Following my name Carri and I'm very simple and easy going person I don't like cheating or taking someone advantages
R D Ronald @RDRonaldauthor
170K Followers 140K Following A transgressive novelist for All and None. Now writing more books while getting older and more miserable. #TransgressiveFiction #TFDI
[email protected].. @erinn_tarpey
482 Followers 363 Following CMO at Visual Lease. Passion for building scalable, results-oriented operations in high-growth tech companies. Fan of telling it like it is.
Tabetha @TabethaJAGirl
3 Followers 2 Following
Gregory Erb, MD @GregErb5
312 Followers 357 Following MD, former D1 football player (KU Jayhawks), laid back yet passionate, on mission to improve lives and effectively treat/cure neurodegenerative disorders
Charlsie Astrid @charlsieaigotti
234 Followers 412 Following I create, express, live, and learn. Just a little bit feral.
David Hendrickson �.. @DHWriter
647 Followers 1K Following Award-winning writer of novels and short stories. Addicted Boston sports fan. Triathlete and marathon man.
Patrick Cain @fivecains
132 Followers 560 Following
Mitze Klingenberg BSN.. @klink52
508 Followers 605 Following Advocate for people with ALS. BSN, RN. Spent career in psychiatric nursing.
Josh @4dmdcure
388 Followers 210 Following Father to 3 amazing kids. 21-year-old son lives with Duchenne muscular dystrophy. Passionate patient advocate, MBA, biotech investor, & marathoner.
Puppers @PuppersTV
84K Followers 432 Following 12 Year Streamer Full Time Partner For @Twitch @Youtube @DeadByBHVR I Have Terminal #ALS Twitch https://t.co/Yz85kqPyLz Youtube https://t.co/YlfqjwdfHm Instagram https://t.co/kDyryLN0RT
Julia @Julia4648692
338 Followers 762 Following Luchar por todos los enfermos de ELA 💪para conseguir una cura. 💪
Cassie Abel @CassieAbel2
193 Followers 175 Following Patient Experience Director. Wife, mother, & once caregiver for my ALS warrior momma. Author of “Our Journey A True Story About Caregiving”
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
Elijah Alley @AlleyElijah
382 Followers 776 Following Father to a wonderful son Former ACMav and Tusculum College Pioneer football player! ALS won’t know what hit it!
Jill @jillHoskins4
194 Followers 416 Following Mom, Grandma. Animal lover. Democrat. Husband of 51 years died of the beast ALS February 2020.
Mary Woodward @MaryWoo78483291
958 Followers 89 Following Big nerd since childhood. (According to hubs can't be a geek since I have no math skills!). Half Italian, half Irish with the temper of both. Hate injustice.
Cathy with a C @cathyedwins
370 Followers 374 Following Mother, grandmother, friend, teacher, bibliophile, vaccinated, activist. 🚫DM’s. #Resistance #Prochoice #WomensRights
Amy Hathaway @Amyides
247 Followers 197 Following
Susan Mac @SusanMac327
46 Followers 551 Following
DeAnna @DeAnna51704747
11 Followers 46 Following
Juli Rochon @juli731
48 Followers 506 Following
Don Altier @DonAltier
401 Followers 683 Following  I live to give others hope... I was diagnosed with ALS in 1992
Prasanna ALS @adhikariprasan
252 Followers 684 Following An advocate for PALS, CALS and their family members. Lost my father to ALS
Willwin9 @WillC69504175
1K Followers 5K Following Big Cubs, Bears and Blackhawks fan. Proud supporter of equal rights and justice for all. Proud Liberal.I stand with Ukraine. History buff. LGBTQ+ ally. #BLM
Peter Thomashow @pthomashow
99 Followers 717 Following
K-Kay 🇨🇦🇺�.. @YesMyNamesKaren
72 Followers 1K Following Married, Mom of 2 grown daughters, fur mom to Luna the Pekingese, she/her.
kelsey✨ @ohthatskelsey
284 Followers 870 Following rest easy mikey ☕️🍂🎞️ david tennant + zelda enthusiast
sharon @sharon00548183
32 Followers 230 Following
Karen Rehling @RehlingKaren
26 Followers 137 Following
Tim Rooney @trooney5051
175 Followers 549 Following
Victoria Neidigh @vneidigh
1K Followers 5K Following Vice President of Medical Strategic Initiatives for Comcast @NBCUniversal Stage 4 MBC Warrior . Staying in the daylight .
Teresa Brown @TerRudy
597 Followers 4K Following
Mary @lovebooks1230
396 Followers 844 Following Mom and grandma. Believer in social justice. Liberal Democrat. Support Biden. I love reading books, working jigsaw puzzles, diamond painting and other crafts.
Maureen Gunton @MaureenGunton
203 Followers 759 Following I’m not much of a poster but I appreciate all of you resisters and fur friends foster moms and dads. Love to see what an all blue congress could do.
@PTAli1 @RepKimSchrier @RepMikeQuigley @RepAdamSmith @lisamurkowski @PattyMurray @SenWarren @SenatorCantwell @cathymcmorris @FDACDERDirector Been saying that!!!! HIV for the most part is to neglect
If only the same urgency as with cancer, HIV, and covid could be applied to #ALS. Screaming into the void. @RepKimSchrier @RepMikeQuigley @RepAdamSmith @lisamurkowski @PattyMurray @SenWarren @SenatorCantwell @cathymcmorris @FDACDERDirector
I am really tired of reading the same narrative about ALS time and time again I know that we as a community has done more for ALS than a lifetime of those before us Yet we are still no where near a treatment or drug I just wanted to at least try something before I go @US_FDA
@jonstew1982 @US_FDA I’m here fighting with you & for @JamieRoseBerryy @MMoutsoulas @derekgunz @ScottFightsALS @MarkSBerardi513 and @WayneStephens77 is here! we are all here for you & with you 🌹💪🏻💙
@WayneStephens77 @US_FDA Ben, are you still out there ? I think about you.
@WayneStephens77 @US_FDA Hi Ben, hope you are alright. I have been supporting my daughter thru her struggles and have come up for air. Going thru twitter , I didn’t see any recent posts from you. I know it’s been hard for you.
@WayneStephens77 @US_FDA This f’ disease always wins. It’s heartbreaking. And it’s so hard for me to see as a pALS advocacy that puts lipstick on a pig and gives false hope. Enrages me. I’m sorry we’ve been stricken by this demon. The only treatment is not getting it in first place sadly. 💔
@WayneStephens77 Don’t feel bad I’ve gone from a life loving guy to a 24/7 bitter angry devastated soul cuz ALS 💔👨👦 and nothing has been done in 150 yrs and like a few top MDs admit another 30yrs if at all. So y’a Im F bitter. You won’t get lipstick on pig from me. I feel for you.
@WayneStephens77 @alsassociation @US_FDA You tell them man! We need less lipstick on a pig approach and more vocal and real like you. F all done in 150 yrs and counting. Shameful.
@LisaMar17763916 @Ml1969 @WayneStephens77 @US_FDA @alsassociation Sadly so true
@WayneStephens77 @US_FDA Cuz as yiure friend said follow the money and als is so rare relative to others bare anyone gives a shit. What pALS go through is disgusting. Before becoming a pALS I would have never believed such a horrific situation on all front could exist until I saw ALS F’ beast & apathy
@WayneStephens77 @US_FDA Finally s/one who doesn’t put 💄on a 🐷 and who doesn’t spew ungrounded positivity. I’ve researched ALS inside out. Must look past fund raising PR. We’re nowhere. Some top MDs gingerly admit we’re 30yrs away if at all. 💔but true.No real💰masses don’t care🥲
@barbara_epstein @WayneStephens77 @US_FDA Brutal reality for 150 yrs and with public apathy and paltry research funding reality is more decades of same sh*t will continue, yes maybe with drugs that give 3m yet we’re all so desperate that they call them groundbreaking and we believe it!
Why does half the battle with ALS feel like just proving you matter, explaining why your life is worthy and convincing others to give a damn while your body shuts down? Sometimes, I can't tell what is worse: the disease or lack of empathy?
I wish I could go back to my dreams, because I'm free. Free from this wheelchair, free from this feeding tube, free to be the wife and mother I'm supposed to be, free from #ALS. I'm 36 years old, I deserve better than death. @DrCaliff_FDA @FDACBER #AMX0035 #EveryPointMatters
@LisaMar17763916 @WayneStephens77 Both of you, IMO, are badasses 🙌
@WayneStephens77 You’ve every right to feel this way. Don’t feel guilty for it either. Be authentic and be true to you. I get how you feel as I’ve been feeling the same - so letdown by people I cherish. It hurts. Your #ALS tribe is here for you today and everyday.
People, do better by your friends and family who are living with #ALS. It’s a lonely disease. If it were cancer, you’d fall all over yourself to help. #ittakesavillage #EndALS @WayneStephens77
For the last few months I have let bitterness and anger control my soul Bitter at people who I thought would be there for me And sadly showed me to be wrong I have been struggling with this and the reality of my situation Shit got real when I had to get a trach (1/2)
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