Benjamin Stephens @WayneStephens77
If you ain't tryin you're dying. ALS warrior and advocate! Joined July 2019-
Tweets843
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Followers1K
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Following575
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Likes1K
@MaryKusior @US_FDA I'm still here. Trying to find the light. I'm not sure how, but I am trying.
Check!!! Your fucking move @US_FDA
@bernie_d27 @US_FDA Still proverbial kicking. Still battling this disease.
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
@SethPoling10 It's doing a lot better. I have an appointment to see about botox in a couple weeks
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)
@HaterAls @moonshadow407 I'm still here, trying to find my way!
@ElaineMannFL Still trying to find the light again. I am slowly figuring it out. I just need some positive news about treatments. I don't see anything that I can get excited about. It was Nurown for me. But I don't see me getting the opportunity to find out. Thank you for checking in !
I think that I might need some professional help.
@MaribethW9007 Thank you for your concern. I am having a better day. Just going to try to build off of that.
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
@SethPoling10 @bsw5020 @SteveGleason @pjgreen @ScottFightsALS @jonstew1982 @Garrett_J_Smith @ChrisSnowCGY @stevens_nation @AdyBarkan @derekgunz @AlsDads @Silver_Fox10_7 @KRob8753 @MMoutsoulas @SteveGMedia @GJBest1982 @ThurmanTough @Strongwhenweak @skalpakoff @johndhopkins Happy Fathers Day to you too brother!!!
@barbara_epstein Hugs and kisses!
@barbara_epstein Goodnight Barbara, sweet dreams!
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
@barbara_epstein Thank you Barbara.
@HaterAls I have blood behind my left eye. They said that it was probably from my diabetes.
@barbara_epstein I am! Everyone needs someone!
@barbara_epstein Good afternoon Barbara!🤠
Brian Wallach @bsw5020
142K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease. #ALSisHere #SoAreWe
Sadhvi Mayuri Om @Mayuri_Saxena
9K Followers 561 Following 40yo 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. Caregiver. CEO @synapticure providing medical care for Alzheimer’s, Parkinson’s and ALS. Co-founder @iamalsorg. EP @noc_film.
Seth Poling @SethPoling10
4K Followers 370 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 915 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 Advocate for people w/ALS & Amyloidosis (that killed Mom). FDA must do more for Rare Diseases. #DyingWaiting Dodgers Rams & Trojans Fan
Shah Minokadeh, M.D. @MinoShah
4K Followers 822 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
Girl Travelin Alone @CathyStandish
4K Followers 5K Following
ALS TX DAD @AlsDads
2K Followers 818 Following
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 #IWriteALS
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 847 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 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. Animals are my Love!!
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
937 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
Nate Methot @a_life_derailed
2K Followers 717 Following Author of "A Life Derailed: My Journey with ALS", a memoir 40 y/o living with #ALS since 2011. #EndALS #empathy Memoir and blog at https://t.co/lSqWxLqUXm
Angela Okomoto @FChidera45187
0 Followers 9 Following
Scarlett Johansson @TylerLarry65866
79 Followers 4K Following Account created specifically for my fans I love the universal world ❤️
Yumi🌸 @VibbeeYUmi
37 Followers 2K Following Shop floor queen bedroom tease ✨ Exotic mix that keeps you craving more Unwrap me through the FREE link below @VarYumii @VarYumii
Abdouliejarju @jarjua530
585 Followers 7K Following A young boy who cares about my family and trying to make ends meet and live a good life
Gwendolyn @Gwendolyn110151
16 Followers 229 Following sincerely comes and sincerely comes back.i am an ordinary woman I hate lies
LRS @LRS5252
2K Followers 826 Following Obsessed 4 animals. retired finance,payroll,hr mgr.GO Sopranos! Packers owner !! kicked cancers ass! Married—lots of animals & kids & grandkids NO DMs pls
Isabella @isaolivia456
0 Followers 43 Following
pat wharton @Pjwharton80
594 Followers 581 Following fighting MND with everything I got 👊👊,blessed with a beautiful wife and four amazing children and 1 beautiful granddaughter xxx. love u all forever and ever x
eyegazeartist @sarahezekiel
12K Followers 12K Following Loving life despite MND/ALS. Eyegaze & AI artist, @MND_NWLondon Branch Co-Chair & @LifelitesOrg Patron. Stunt double in Sarah's Story.
TeamJacobWV @TeamJacobWV
867 Followers 315 Following Jacob Harper, 24, diagnosed with ALS in March, 2022! Fighting for a cure through a clinical trial at Ohio State University! "Genetic FUS-Gene Mutation" (P525L)
Mandi @RunningMama0522
2K Followers 1K Following
Jayne Halhead @Jaynes__World
6K Followers 5K Following In memory of my Dad, a burly #Lancashire dairy farmer, I'm raising awareness of motor neuron disease.... #MND #MoreNeedsDoing! Friend of Bill W.
💙Brittney💙 @AZ_Brittney
256K Followers 118K Following Loves Dogs, Ice Cream, News and Politics. #SpacesHost
Lyle Ostrow MD PhD @LyleOstrow
711 Followers 1K Following Neuromuscular doc/researcher @TempleNeurology @ALSHF. Director, ALS Postmortem Core collab w CDC ALS Registry. Chair, DoD ALS Res. Prog Panel. Views my own.
Just a girl w/#ALS @JC75408607
722 Followers 526 Following Diagnosed with ALS 3/30/22. Living life day by day while I try and process this journey.
KEVIN STOCKS 🏴... @mrkevstocks
3K Followers 3K Following Cancer, GREYZONE LYMPHOMA palliative care 43 (constantly feeling tired now)...Angry bastard sometimes lol. INSTAGRAM STOKEROONIE.oh and fwkin SINGLE
Smitsonian @Smitsonian_1
144 Followers 495 Following Name is Aaron! Like sharing stuff I think is interesting ALS (Lou Gehrigs Disease) is part of my life not all of it!
glenn grant @glennggrant
554 Followers 1K Following married to a wonderful lady and father to Lucy the corgi, football and hockey fan(go Habs)...music lover... #GoodTwitter #ALS warrior
Kathy @Kathy7483672148
123 Followers 604 Following Married 52 yrs to the love of my life who died from 100% Fatal ALS. Mama, grandmama, entrepreneur. Counted everyday with my hubby as a blessing. #ALSsucks
Angie Mia @AngieMia1510146
559 Followers 4K Following
Steve Smith @SteveSm99131516
1 Followers 279 Following Illinois Department of Corrections/Retired. Union Strong, Nature, cycling, Let There Be Rock
All is Well: Lessons @AllsWell333
477 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 56 Following
FranD'Ag @fdag2493
12 Followers 594 Following
. Josh__/_Swerve__End... @SwerveALS
263 Followers 297 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 99 Following
Tutor Curtis @CurtisTutor
4 Followers 65 Following Competent writer. For Statistics,Chemistry,Biology,Physics including all sciences Lab Reports, and all academics essays. Gmail;[email protected]
Kasandra Foster @KasaAFoster
126 Followers 861 Following
Alice Darwin @Alicedarwin157
111 Followers 387 Following A gentle woman with a lot of self respect and dignity
Sandy Hebert @47sass
44 Followers 315 Following
G. Campos @Guadalu45917345
7 Followers 81 Following
Brittania mattox @BrittaniaMattox
1 Followers 59 Following
Hoops4ALS @hoops4als
444 Followers 310 Following Hoops4ALS is dedicated to uniting college basketball coaches, players, and fans to raise awareness for ALS research and advocacy
The Rigo Gallery @ArtistCmd
66 Followers 261 Following Welcome to my gallery! Just a male Frida Kahlo here; a crippled/disabled Tx man who loves to paint. My works advocate for disability awareness.
Deanie Azevedo @Deanie_735
0 Followers 194 Following
Claudia Winkleman @Claudiawinklefx
373 Followers 2K Following 👥| Philanthropist 📈| Professional Trader 🧒💻| Certified Account Manager 🌏| Co-Founder@metatradefx 📍| London Trading Floor 🏦| Stock Market
Sometimes I Shake @shake_sometimes
209 Followers 408 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 3K 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: NYT, WaPo, WIRED & TIME. Speaker & moderator on AI ethics & agency. Forbes Under 30 scout. Scott-Morgan Foundation trustee.
Linda Rushton @LindaRushton13
8 Followers 55 Following
Wendy Butterfield @Wendy143JMB
0 Followers 11 Following
Candy Rich @rich_teatea
109 Followers 345 Following
barrister lucasreid @BLucasreid
187 Followers 647 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
Brian Wallach @bsw5020
142K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease. #ALSisHere #SoAreWe
Kelsie Snow @kelsieswrites
57K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
Sadhvi Mayuri Om @Mayuri_Saxena
9K Followers 561 Following 40yo 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. Caregiver. CEO @synapticure providing medical care for Alzheimer’s, Parkinson’s and ALS. Co-founder @iamalsorg. EP @noc_film.
Sarah Nauser @SarahNauser
15K Followers 562 Following Dominating ALS one day at a time since 2018. Retired Police Officer. “Love the life you live and live the life you love” Go Royals! 💙#FightLikeAGirl
Seth Poling @SethPoling10
4K Followers 370 Following Wild & Wonderful WV. FSU grad. Married to @erika_poling , Father to Liam & Bayler, ALS Warrior & advocate. #EndALS Founder of @project_seth
Jamie Smith @JamieLW8
4K Followers 524 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
Sandra W. Marlowe @sandrawmarlowe
3K Followers 915 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 Advocate for people w/ALS & Amyloidosis (that killed Mom). FDA must do more for Rare Diseases. #DyingWaiting Dodgers Rams & Trojans Fan
I AM ALS @iamalsorg
27K Followers 721 Following I AM ALS is the largest community movement made up of the very people living with, impacted by, and highly motivated to end ALS.
Shah Minokadeh, M.D. @MinoShah
4K Followers 822 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
Kaye @KayeSteinsapir
113K Followers 22K Following Molly Steinsapir Foundation founder. The Obliterated Place podcast. Transforming Pain Into Purpose on Substack. FB, Threads & IG: @kayesteinsapir #TEAMMOLLY
Girl Travelin Alone @CathyStandish
4K Followers 5K Following
Stew @jonstew1982
2K Followers 180 Following Living with ALS, “If you’re not part of the solution then you are the problem.” Love my wife & kids more than ANYTHING!
ALS TX DAD @AlsDads
2K Followers 818 Following
Steve Gleason - "Live... @SteveGleason
182K Followers 291 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 944 Following Just a dude with ALS. Not dead yet, though.
Matt Wild @marinemattcda
516 Followers 2K Following Family Man, Husband, former Marine, disabled Vet w/ ALS, Matt's Place Founder, Advocate #Uncrushablespirit, Adaptive Gamer
Nancy Honaker @NancyHonaker6
297 Followers 622 Following Fighting ALS, so my “give a damn” is busted. Grandma of a type 1 diabetic, Military brat, reference librarian. My opinions are my own.#insulinforall
Tim Lowrey @gatortimbo
455 Followers 624 Following Grateful and blessed to be married to Emily Wester Lowrey, UF Pharmacy '92, Buffalonian, Diehard Gator, Home remodeler, Avid reader of various, living with ALS
KEVIN STOCKS 🏴... @mrkevstocks
3K Followers 3K Following Cancer, GREYZONE LYMPHOMA palliative care 43 (constantly feeling tired now)...Angry bastard sometimes lol. INSTAGRAM STOKEROONIE.oh and fwkin SINGLE
Shaun Kalpakoff @skalpakoff
787 Followers 456 Following I am living with ALS since 2017 . Father to one incredible teenage son Ashton. #teamshaunyboy https://t.co/fBhBLCwSDS
Michael @mpabull
614 Followers 18 Following
Dolores Vizzini @VizziniDolores
2K Followers 4K Following Fan von @ShenYun @ShenYunCreation @ShenYunShopca, #Traditionelle #Ölmalerei #Kunst #Musik #Natur
Deb Paust @PaustDeb
1K Followers 679 Following Blessed mom, lover of snow, old fashion enthusiast and trying to be the change I wish to see in the world. #GoodTrouble
LindaDB @LindaDBuhr
354 Followers 474 Following wife, mom, lapsed attorney 😂, volunteer, lover of books, daisies, and organizing. oh yeah, and ALS survivor today.
Phillip Stanford @Phillstanford
39 Followers 48 Following
Mandi @RunningMama0522
2K Followers 1K Following
ALS CURE Project @alscureproject
721 Followers 462 Following The purpose of the ALS CURE Project is to provide laser focused leadership and sponsor scientific research leading to a cure for ALS (aka. Lou Gehrig’s Disease)
Pjwertz @Pjwertz1
684 Followers 1K Following Desert dweller who loves all things beautiful and peaceful.
Alexandra Cavaliere @ajcavaliere
334 Followers 193 Following Wife, Daughter, Sister, Friend, Fur Mom, Lawyer and currently living my best life despite having #ALS.
Ales for ALS @AlesforALS
624 Followers 2K Following Since 2013, the #AlesForALS program has raised over $6,000,000 for ALS research at @alstdi. Cheers to beer and to helping #EndALS!
Her ALS Story @HerALSStory
2K Followers 150 Following We are a group of women diagnosed with ALS before our 35th birthday who are challenging the stereotype that this is an old white man's disease.
Lyle Ostrow MD PhD @LyleOstrow
711 Followers 1K Following Neuromuscular doc/researcher @TempleNeurology @ALSHF. Director, ALS Postmortem Core collab w CDC ALS Registry. Chair, DoD ALS Res. Prog Panel. Views my own.
Dr. Stacy Lewin @FarberStacy
487 Followers 401 Following Wife to a loving husband, Mom to 2 awesome young men, Mom to one adorable doodle fur baby, Anesthesiologist and a lucky daughter, sister, & friend #ALS Warrior
TeamJacobWV @TeamJacobWV
867 Followers 315 Following Jacob Harper, 24, diagnosed with ALS in March, 2022! Fighting for a cure through a clinical trial at Ohio State University! "Genetic FUS-Gene Mutation" (P525L)
Doug Rose @dsrose
2K Followers 6K Following Grateful father of four. Striving for 613. Entrepreneur. Skier. Circuit driver hitting apexes. Independent. Pro facts. Pro truth. Here, right matters.
Nancy Homan @NancyHoman5
212 Followers 239 Following
ckb407 @moonshadow407
508 Followers 461 Following PA resident again after 6 years in New Orleans, the city that still has a large part of my heart.
Jake @bobrobe88940851
52 Followers 125 Following
Kara MaDaisy @KaraDaisy50
1K Followers 5K Following 💙🇺🇦🌻coffee, chocolate, wine, hiking, pickleball...twinmom, lotsa boys, and a girly goldendoodle 🐾 #ProChoice
Norman MacIsaac @NormanMacIsaac
1K Followers 1K Following #ALS / #MND ambassador, writer, advocate, TEDx speaker ... fighting for access to treatment and services. Author of "The Best of the Worst News"
Anna Giulietti @GiuliettiAnna
44 Followers 181 Following
Gbrfish🐠 @gbrfishRN
263 Followers 1K Following
💙Brittney💙 @AZ_Brittney
256K Followers 118K Following Loves Dogs, Ice Cream, News and Politics. #SpacesHost
Hillary Rothrock She/... @HIRH
1K Followers 4K Following Life-long advocate for disability rights. 🏳️🌈 Equitable Justice For All
Seaotter @Seaotter14
1K Followers 2K Following Wife, Mom and Nana. Fan of baseball and all things Red Sox. Grew up by the ocean so it is my blood! Always stay humble and kind.
Chan Yeow @ChanYeow1
954 Followers 2K Following Anaesthesiologist, Intensivist with interest in Home Ventilation
Julie @mtandlakegirl
286 Followers 919 Following ❤️🎶,🐈,genealogy..people with stories.Midwest grown mountain matured. Dem since 1976. CALS(mom) survivor of dad & brother’s suicide. Work at Meals on Wheels
eyegazeartist @sarahezekiel
12K Followers 12K Following Loving life despite MND/ALS. Eyegaze & AI artist, @MND_NWLondon Branch Co-Chair & @LifelitesOrg Patron. Stunt double in Sarah's Story.
Synapticure @synapticure
4K Followers 477 Following Personalized virtual neurology care for neurodegenerative diseases like Alzheimer's and related Dementias, Parkinson's, ALS, and Huntington's
Ali @BrownBeltedGirl
526 Followers 1K Following All dogs are stylish. Politics. Why tweet when you can retweet? Hate ALS.
Kathy O'Shea @kos3124
1K Followers 2K Following person, mom, grandma, sister, friend, knitter, dog lover, endorphin junkie, ER/UC Physician, now on Bluesky.
Just a girl w/#ALS @JC75408607
722 Followers 526 Following Diagnosed with ALS 3/30/22. Living life day by day while I try and process this journey.
lori andre @loriandre3
1K Followers 319 Following Mother of 3 boys, wife of Brian Andre who was diagnosed with ALS in 2016.
Raymond Williams @wheels2017
120 Followers 1K Following
Mike Fleming @mfleming143
1K Followers 8K Following 19 years of buy side experience. CFA charter holder. Goldbug and silver holdr. Anti-currency debasement evangelist. Hobby = AvGeek. ALS advocate.
pat wharton @Pjwharton80
594 Followers 581 Following fighting MND with everything I got 👊👊,blessed with a beautiful wife and four amazing children and 1 beautiful granddaughter xxx. love u all forever and ever x











