Melissa Survick @MSurvick
Joined February 2020-
Tweets828
-
Followers284
-
Following310
-
Likes9K
Tattoo is done!! The octopus is healing the motor neurons. This is in support of @Robdback and his fight against #ALS. #ENDALS #tattoodesign #tattoo
We have been championing for #NUROWN since my husband was diagnosed in 2020. Please @BrainstormCell #filetheBLA so that @FDACBER and @US_FDA can do the right thing and grant access!
We have been championing for #NUROWN since my husband was diagnosed in 2020. Please @BrainstormCell #filetheBLA so that @FDACBER and @US_FDA can do the right thing and grant access!
@sean_uk @VPResearch_ALS People in US watched their family members regain function in #NurOwn P3 trial & EAP. Rapid progressors w 2+ pts/mo decline are walking, talking, eating, breathing & living life 3-4 yrs into #ALS. Their functional improvement aligns w data #Biomarkers & totality of the evidence.
So @alsassociation and @ALSMNDAlliance is this accurate? If so are these the same opinions by the same people?
So @alsassociation and @ALSMNDAlliance is this accurate? If so are these the same opinions by the same people?
We are waiting @alsassociation
Keep changing the world @sabrevaya and @bsw5020 and everyone else who made this happen! So grateful! #ENDALS
Keep changing the world @sabrevaya and @bsw5020 and everyone else who made this happen! So grateful! #ENDALS
I agree @alsassociation please take a stance on NurOwn @BrainstormCell please file the BLA. @FDACBER please exercise your regulatory flexibility. It’s time to do #WhateverItTakes and #ENDALS
I agree @alsassociation please take a stance on NurOwn @BrainstormCell please file the BLA. @FDACBER please exercise your regulatory flexibility. It’s time to do #WhateverItTakes and #ENDALS
3 years ago my husband had neck surgery- Today his diagnosis is ALS which means no more clinical trials! Today we fight for Rob’s life! @BrainstormCell please #FileTheBLA #NUROWN #DAD2022 #ALS
Please @alsassociation do right by us pALS and cALS and don’t try to lobby for the #ACTforALS money. Your goals do not align with the #ALS community and we do not need this path to be any harder. Respectfully step out of the way and let @iamalsorg lead.
When you stand for what is right, you stand tall even if you can’t stand at all. Good night moon.
Yes please @BrainstormCell we are so excited for your technology and my husband needs it in his body immediately!
Yes please @BrainstormCell we are so excited for your technology and my husband needs it in his body immediately!
Today @Robdback is still coaching. Please @BrainstormCell #filetheBLA so he can keep coaching! #nottodayALS #endALS
Why aren’t #ALS Victims given the same rights at those with #cancer? #NurOwnNow #mybodymychoice
Why aren’t #ALS Victims given the same rights at those with #cancer? #NurOwnNow #mybodymychoice
Today is a win!! Thank you @POTUS for hearing us! #nottodayALS
Today is a win!! Thank you @POTUS for hearing us! #nottodayALS
Please @BrainstormCell #filethebla we know #NurOwnWorks
Please @BrainstormCell #filethebla we know #NurOwnWorks
So this is amazing: A donor to @iamalsorg has just pledged to donate $5,000 (up to $25K) for every 1,000 new followers that follow me in the next 24 hours. Twitter can you please help this ALS-having, “not today”-believing, “good night moon”-tweeting guy out? #Grateful
Thank you so much @RepMikeQuigley and @ChrisCoons we so so grateful! My husband is fighting for his life and this was such great news!
Thank you so much @RepMikeQuigley and @ChrisCoons we so so grateful! My husband is fighting for his life and this was such great news!
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
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.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
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
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.
Shah Minokadeh, M.D. @MinoShah
4K Followers 729 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 906 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 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)
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.
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!
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.
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
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.
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.
Nicole Cimbura @nicolecimbura
1K Followers 2K Following
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
alsHATER @HaterAls
1K Followers 966 Following als hater MM lover Impossible is an option One woman army
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
Deb Paust @PaustDeb
1K Followers 723 Following Blessed mom, lover of snow, I AM ALS Organizing Associate, old fashion enthusiast and trying to be the change I wish to see in the world. #GoodTrouble
Dona Barclay @DonaBarclay
1 Followers 11 Following
Ruth Curley 🌻🇺�.. @rcurley6
5K Followers 5K Following Lost cousin to ALS in 2009. #BlueCrew #RainbowMafia #MMIW #SlavaUkraini Rt AKA 7/2017 Liberal #WokeMob #🟦 🚫DMS #ThankYouTG #RIPTG
It Is What It Is @WishingforCure
296 Followers 379 Following I have ALS. Tulane Grad. MBA, studied Law at Tulane & Harvard. Partner in PHA LLC, Oceanside, Ca. Distributor of Ji Wu Li https://t.co/EVfP4R1Y04
Jill Brattain @MommaJillB
542 Followers 558 Following Love my family, love my life, but most of all, Love God. Victim of the ALS beast. Miss my best friend.
Mara @mara_dolan
154 Followers 193 Following Fighting for my husband's life. Fighting for #NurOwn. Fighting to change the pattern of failure. ALS = same exact prognosis today as in the 1800s.
andrew kiserit @AKiserit
216 Followers 966 Following #agent of progress #father #responsible citizen
Andrea Koval @jaxmadmom84
2K Followers 406 Following dereks widow :( , momma to 2 babes 2 angels raising ALS awareness and Retinitis pigmentosa awareness….
Jason Anderson @sooner0880
41 Followers 469 Following Husband, proud dad of 2 great kids, als warrior trying to survive and thrive and a blue team dem in the reddest of red state.
Johnson Kelly @Loveone11447596
5 Followers 316 Following
Liz @Liz_cantabra
17 Followers 84 Following Gymnast. Dancer. Teacher. Irish-American-cántabra-sevillana-onubense.
Susan Goldstein @susanhgoldstein
380 Followers 382 Following Pharma/biotech business and communications professional. Mom. Volunteer advocate/family with #ALS aka Lou Gehrig's disease. #EndALS. She/Her/Hers
NATACHA SAINT LOUIS @NATACHASTLOUIS2
205 Followers 1K Following
Mordecai Krumbein @MSZK
86 Followers 947 Following
Phillip Stanford @Phillstanford
52 Followers 54 Following
E Fuller @FuBa311
351 Followers 1K Following I became a Speech-Language Pathologist because your voice, your message, and your story is worth my time. Posts are my views and opinions. she/her/hers
Niki 🦼💕🇺🇦.. @NStupps
1K Followers 2K Following Rum loving dog owner and servant to the cats #cats #dogs
Wendi 🇨🇦💪�.. @wendiwarrior
497 Followers 3K Following MS warrior 💪🏻, Mind over Matter 🧠, neuro-fu**in'-plasticity! I love my Schnauzer, Flames 🔥 Bolts ⚡️music, books and cooking🙏🏻🐾🍸🛼🛴🎹🇨🇦📚🧘🏻♀️
Marcela Capuano 🎨 @MarcelaCapuano
138 Followers 280 Following Nada es imposible, esperando el milagro #ALS #EM #ELA
MxTiina💙🗳️�.. @TiinaLK
909 Followers 3K Following Spell casting instigator of quests and missions. Fluent in COBOL & Hollerith. Daughter of Suomi. 🇫🇮 LIVING with ALS, 5+ yrs since DX. Namaste & Fuck ALS🖕
Lilian Ngusuur @LNgusuur
13 Followers 114 Following
Donald Davis @atcyyc
906 Followers 593 Following Proud father of 2 children on the spectrum! Retired Air Traffic Controller, Pilot,Sailing,#endALS,#autism aware, #f*ck Cancer, #RA, #Chiara,Conservative
عسكر @wdSeaidDSgniCwN
238 Followers 526 Following I've been a side ALS patient for 11 years, and I'm still fighting to stay strong, thanks to God. Please find a cure for the disease.
Steve Rice @rice0494
2K Followers 2K Following Canadian, liberal, intersectional feminist,Pro Choice, BLM, equality, #EndAls, climate change is real#Leafsforever, dms welcome,he/him
Sally Dehner @SallyDehner
805 Followers 862 Following Left-leaning Independent, Christian. Love to write; sometimes snarky but can't help it, times call for it. ALS diagnosed 2020, still snarky.
OzarkGirl482 @Girl482Ozark
228 Followers 1K Following ALS, MS & Breast Cancer advocate. lets all be kind and help each other. spread ❤️
Tous En selles Contre.. @associationTECS
67 Followers 217 Following Association créée par 5 patients touchés par la SLA. French ALS research association created by 2 cALS and 3 pALS #als #microbiote #maladiedecharcot #sla
Jeffrey Martin @Jmartinten
116 Followers 548 Following Husband, Father, Grandpy, ALS caregiver, U.S. Air Force Veteran,Budweiser delivery guy, Tigers Lions & Pistons fan, Buckeyes, Ayersville Pilots
Γεώργιος�.. @georgevasilop
317 Followers 911 Following Stocky, bearded Greek/Viking hybrid. Titanium/ceramic hip. Skateboarding. MTB/freeriding. NHS. eZine: Distasteful Shroom. He/him.
Lisa Martinez @LisaMar17763916
461 Followers 685 Following supporting @jamieroseberryy 💙ALS community 🐺🌹#ENDALS a wise woman once said “ you can’t scare me I have ALS “@sandymorris333
Ducky Fuzz Fuzzy Duck @One_Bullet_Army
2K Followers 2K Following 🇺🇸 Desert Storm Vet 🇺🇸 Bronze Star Recipient. Lou Gehrigs Disease (PALS). Same handle on Truth. No Filter! If you are cute and single let’s mingle!
Ann @Ann58032824
335 Followers 1K Following Septic Shock Survivor. Caregiver to mom with Vascular Dementia/ALZ 15+ years. ALS Advocate for sister & all pALS/cALS #DrugsInBodies #Hope #CURE
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.
Gregory Erb, MD @GregErb5
311 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
Unite ALS @unite_ALS
1K Followers 4K Following Unite is developing an all-in-one platform to bridge the gap between the #ALS community & researchers to accelerate the development of treatments & cures.
ALS TDI @ALSTDI
10K Followers 6K Following The most comprehensive lab focused on ALS/Lou Gehrig's Disease. We are the Drug Discovery Engine discovering & inventing effective treatments for ALS. #EndALS
Ray Eric Lapointe @ric_lapo13
353 Followers 1K Following 45ans,Père de 3 enfants atteint de la SLA Je me bas pour ma vie,Changeons les règles
Unite Genomics @UniteGenomics
291 Followers 933 Following Unite is developing an all-in-one platform to bridge the gap between the rare disease community and researchers to accelerate the development of treatments and
deb wot @debalw
52 Followers 236 Following Math and science teacher, https://t.co/05Obmar9cV., B.Ed.. Became an ALS advocate my sister was diagnosed. They said nothing could be done, the truth is nothing was tried.
kathy weiss✍🏻 @middlechildtake
1K Followers 3K Following Writer/marketer who knows we are more alike than we are different. I have a ❤️ for anyone touched by #ALS.
Katrina DeVinny @DesertTrina
1K Followers 2K Following Wife and mother Coyotes and D backs fan. Love my family, love my work, love sharks, miss my mom and brother. #ALSSucks #EndALS
Tom Ford @TFordATC
2K Followers 2K Following Husband, Father, Grampa, Athletic Trainer and Harlem Shake extraordinaire! Now living with ALS. https://t.co/gShaorNnU8
Kristiana Salmon @KristianaSalmon
524 Followers 359 Following Director, Clinical Development at QurAlis. ALS advocate, genetics nerd, 🇨🇦, #womeninstem. Tweets & opinions are my own. she/her
Author Kris Francoeur.. @KFAnnaBelleRose
7K Followers 7K Following I'm Kris Francoeur - author, ghostwriter, educator, wife of an ALS warrior. Four published romance novels, one coming soon, and a memoir on grief. No DMs.
D'Andrea Jones @wahhooscwgrl
617 Followers 5K Following I lost an Amazing Husband to the horrific disease ALS! Raise awareness to Lou Gehrig’s disease! #ALSSucks #SoulMates #ALSFindACure
Sara Saez Atienzar @AtienzarSara
1K Followers 812 Following Assistant Professor in the Department of Neurology @OSU. Translational research for neurodegenerative diseases. Former NIH trainee. All views are my own.
Lauren L @LaurenL18641152
568 Followers 4K Following Proud Wife, Mother, Sister of ALS Warrior and PuppyMama. Stand with Ukraine. 🌻
Mauricio Jimenez @mauricioj2001
346 Followers 139 Following I’m currently in the fight of my life. I have terminal Illness, ALS. I’m a husband and a father of two. don’t forget to drop a follow.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
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.
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
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.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
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
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.
Shah Minokadeh, M.D. @MinoShah
4K Followers 729 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 906 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.
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
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)
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.
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!
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.
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
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.
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.
Nicole Cimbura @nicolecimbura
1K Followers 2K Following
Kristiana Salmon @KristianaSalmon
524 Followers 359 Following Director, Clinical Development at QurAlis. ALS advocate, genetics nerd, 🇨🇦, #womeninstem. Tweets & opinions are my own. she/her
Dan Tate @dantate2
660 Followers 866 Following FTP OG, I Am ALS Board, fighting ALS, “Democratic Party” not “Democrat Party”, words matter otherwise why use them.
OzarkGirl482 @Girl482Ozark
228 Followers 1K Following ALS, MS & Breast Cancer advocate. lets all be kind and help each other. spread ❤️
Chris Snow @ChrisSnowCGY
26K Followers 194 Following Husband & Dad | Walking science experiment | Determined to beat ALS & win a Stanley Cup | Citizen of both 🇺🇸🇨🇦 | Assistant General Manager, Calgary Flames
Gia @giapolo86
609 Followers 169 Following hell hath no fury like a daughter fighting for her father's legacy #endALS #iamALS #actforALS
Mauricio Jimenez @mauricioj2001
346 Followers 139 Following I’m currently in the fight of my life. I have terminal Illness, ALS. I’m a husband and a father of two. don’t forget to drop a follow.
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
I am ALS Medic @AlsMedic
146 Followers 96 Following After 36 years as an ALS (Advance Life Support) provider in EMS, I am now an ALS (Amyotrophic Lateral Sclerosis) disease patient.
Andrew Grimaldi @AndrewNGrimaldi
610 Followers 1K Following Dad. Husband. Retired. Living with ALS. CEO Life of Leisure
Pete Spencer @New_Spence
386 Followers 212 Following Retired educator. Current retailer at L.L.Bean and ALS advocate. Husband and dad who likes time on a trail, around a campfire and in a tent.
Becky Martz @becky_martz
441 Followers 409 Following I am on Twitter to gain information regarding ALS. I lost the best dad ever to this wretched disease and I carry the gene that caused his ALS.
Lesley Krummel @beatalsnow
173 Followers 191 Following I’m a very determined, strong woman fighting ALS. I’m a mom, grandma, great grandma, sister, daughter, wife. I love music, I used to love to dance, exercise.
BridgetRebecca @BridgetRebecca4
841 Followers 663 Following Momma bear 🐻 fighting for ALS treatments and a cure #Andrewsstrong
Greg Gowe @GregGowe
10K Followers 379 Following Dad. Husband. Lawyer at TELUS ("retired" by ALS). Advocate. I type with my eyes.
Author Kris Francoeur.. @KFAnnaBelleRose
7K Followers 7K Following I'm Kris Francoeur - author, ghostwriter, educator, wife of an ALS warrior. Four published romance novels, one coming soon, and a memoir on grief. No DMs.
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.
Proud Retired Navy CA.. @KRob8753
2K Followers 2K Following ALS is my battle now. 1/6/21 was an attempted coup. Never Trump. “We convey by our presence, and our actions, that which is important.”
Racing for ALS @racing_als
821 Followers 636 Following An amazing group racing to make a difference... Praying for a cure!! 501c3 - Over $1.5 Million raised!! Donations & Merch via our website.
Morris ALS Principles @ALSprinciples
326 Followers 19 Following
Tara Collazo @TaraCollazo1
414 Followers 706 Following Victim of #ALS, fighting for survival. You may see me struggle but you’ll never see me quit. #ALS is destroying my family. #DyingWaiting
Sally Atwood @SallyAtwood_
210 Followers 172 Following Wife,Mom & Nana 8 grandchildren. Tyler Tx Diagnosed with Bulbar ALS 11/2020. ALS is taking over my body. Can’t eat, chew, swallow, drink now legs are going. 🥊
Pete Wallach @pwallach87
1K Followers 2K Following Top 5 cartwheeler in the Midwest*. Opinions are my own. CFO, @Synapticure. YC S20. previously @bainandcompany, @columbia_biz, @uva . #ENDALS
Sara Saez Atienzar @AtienzarSara
1K Followers 812 Following Assistant Professor in the Department of Neurology @OSU. Translational research for neurodegenerative diseases. Former NIH trainee. All views are my own.
Susan Goldstein @susanhgoldstein
380 Followers 382 Following Pharma/biotech business and communications professional. Mom. Volunteer advocate/family with #ALS aka Lou Gehrig's disease. #EndALS. She/Her/Hers
J Davis @Sportsadd51
514 Followers 1K Following
Hannah @radicavaqueen
1K Followers 558 Following Pretty obviously not affiliated with MT Pharma. Tweets are my own. (she/her)
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
SOS 4 ALS @SOS4ALS
287 Followers 561 Following Advocate for people with ALS. This "rare" disease has taken 3 from my life. *Drugs in bodies, hope for souls NOW.* Opinions expressed are my own.
Pat Dolan @Team_Thriving
943 Followers 1K Following Mapper who is Striving to be Thriving with #ALS Author of the ALS Geospatial Hub - https://t.co/Po3Z3KCvuS #nohandsmapping
Rob Burrow CBE @Rob7Burrow
199K Followers 2K Following Proud owner of the Autobiography of the year 2022. You can get it at all book stores or Amazon. #toomanyreasonstolive Number 1 Sunday times best seller!
JulieDoyleCullen @JulieDoyleCull
555 Followers 821 Following Business woman and caregiver turned #author. Doing what I can to fight #ALS
lori andre @loriandre3
1K Followers 335 Following Mother of 3 boys, wife of Brian Andre who was diagnosed with ALS in 2016.
Her ALS Story @HerALSStory
2K Followers 164 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.
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.
Sorry, I’m Sad @sorryimsadpod
1K Followers 1 Following A podcast about grief, loss and the importance of hope. Hosted by @kelsieswrites.
Matt & Karen Toole @TooleKaren
566 Followers 427 Following Parents of 2 wonderful kids, ALS Awareness advocates #thankfulgratefulblessedALS. #MattLIVED12YearsWithALS
ALS Warriors - Glynis @ALS_Warriors
561 Followers 223 Following Widow due to ALS. Fighter because of ALS. Three words for ALS, WE WILL WIN! All thoughts are my own. #EndALS
ALS TDI @ALSTDI
10K Followers 6K Following The most comprehensive lab focused on ALS/Lou Gehrig's Disease. We are the Drug Discovery Engine discovering & inventing effective treatments for ALS. #EndALS
Meghan Mania @ManiaMeghan
219 Followers 230 Following Fighting ALS in memory of Dad, Development Manager ALS Therpay Development Institute #EndALS #TeamJimmysGirls #TriStateTrek all thoughts are my own
ALSvets @AlSvets
173 Followers 78 Following ALSvets are a team of US Veterans with ALS and caregivers
Steve Nash @SteveNash
2.5M Followers 1K Following Join me at the @stevenashfdn to make the assist | Co-founder of @trainwithblock | Start your 10-Day Free Trial ⬇️
@HollyLynchez It’s a shame we have to fight for survival and fight for treatments as well. We are battling a 100% fatal disease and it hasn’t killed me yet so be prepared to battle I guess. Diagnosed June 11,2018 still doing pretty good and lots of life left.
@HollyLynchez People like you Holly is killing people every year. You have the right to block people or make it very difficult to get into trials. We as Americans should have the human rights to do whatever trials we want. You need to keep your ethics out of terminal illness. I vote U OUT.
Please @HollyLynchez answer so us battling a 100% fatal disease can plan a head.
Hey @HollyLynchez I was making $70k a year when I first asked @biogen for Expanded Access. My plea was rejected 4x, I'm now quadriplegic, on life support and costing tax payers close to $1M PER YEAR to keep me alive. According to your bioethics, should I kill myself? @statnews
@Mayuri_Saxena @HollyLynchez @biogen @statnews I think this question needs to be answered by @HollyLynchez. We in #ALS land walk between surrender and fight every day, we get to think about death and the dying part every day. Give us your thoughts Holly. Keep my son in mind when your doing your pondering.
@Mayuri_Saxena @HollyLynchez @biogen @statnews Withholding these options from patients is driving patients further into financial struggle as they spend their time and money on non-FDA approved, untrialed, potentially harmful treatment options. Withholding hurts more than helps. Aren’t patients supposed to be priority?
@Mayuri_Saxena @HollyLynchez @biogen @statnews W/O more FDA approved treatments, patients are already spending extreme time and money seeking alternatives. It may sound weird to a bioethicist, but an expensive and safe and trialed treatment is better than the current state of shooting completely in the dark for options.
@Mayuri_Saxena @HollyLynchez @biogen @statnews I would like to see @HollyLynchez and other bioethicists spend 2 weeks living with and caring for an ALS patient. Perhaps take an “ALS challenge” and learn what life is like without use of your body or your voice. One can quickly understand a need for flexibility and urgency.
@Mayuri_Saxena @HollyLynchez @biogen @statnews Really dislike this quote. I would think FDA has a moral, ethical and scientific responsibility to allow patients to try SAFE treatments in the effort of understanding further what works and for who vs. withholding treatments, wasting time & allowing patients to die w/o options.
Hey @HollyLynchez I was making $70k a year when I first asked @biogen for Expanded Access. My plea was rejected 4x, I'm now quadriplegic, on life support and costing tax payers close to $1M PER YEAR to keep me alive. According to your bioethics, should I kill myself? @statnews
Blocked by @LeiaRx. If bioethicists (is she? I don’t know) can’t stand the heat, they should stay out of the kitchen. It is not inappropriate to ask someone who’s expressing opinions about your son’s life what their creds, CV, profession, and plain old job is.
Yes life is hard, but it also is beautiful. It is way too easy to forget that. Good night moon.
Me and the OG @AlsDads. He’s got the crazy ride.
Then it dawned on me years later after a depression spell post tracheostomy. I will be the hero I want to see in the world. I will hold myself accountable and strive to be a better version of myself. EVERY. SINGLE. DAY. Me for me. And I've never looked back. Be your own hero #ALS
I will tell my story again. When I was first diagnosed, I searched for someone I could call my hero but found no one. I remember actually googling 'ALS hero' but there was no one I could relate to. The disease seemed to be swallowing the best of us. I became reclusive for years.
Life before ALS. Do you remember when you had no issues? Do you remember when you could do something without a doubt? I know I sure miss the old me. #NurOwn
@bsw5020 I’d rather have optimism & hope than negativity, defeat & 150+ years of making no substantial progress. My conscience is clean. My motives are pure. My goal is #DrugsInBodies to give you & Kade & thousands of others tools to fight. Tools have existed but denied pursuing perfect.
Please don’t mistake my optimism for naïveté. ALS has taken from me everything from the ability to read my daughters a bedtime story to my ability to help around the house. Everyday is a struggle but I choose hope and to keep fighting. For my and every family. Good night moon.
This isn't a news flash: Many people with #ALS are paying out of pocket for the ingredients that make up #AMX0035. Regardless of what the #FDA decides, doctors will continue to recommend the drug & patients will continue to take it. Those are just the facts. 🤔 @DrCaliff_FDA
#GetItGirl 😤 thank you @BrainstormCell ✨ this ALS family knows #Nurownworks - every ALS patient deserves to feel this caliber of hope; making the ‘final stages’ of this disease not feel so ‘final’… ⚡️💫 #MoreMomentsWithMyMama
1st-thank you all for sending us strength as I pursue trying to be a perfect science experiment in ALSLand 2nd-I know this doesn't touch my ALSFRS score BUT you don't recover function here. To some-it's slight finger wiggles. To me & my beloveds-it's so much more. @BrainstormCell
NurOwn works! @US_FDA @FDACBER @FDACommissioner Are you listening and SEEING this ? If our fingers move, we can steer our power chair. This won’t be reflected in our ALSFRS score but it works. And what can we regain if we continue treatments?! We could get our lives back! PLEASE!
#GetItGirl 😤 thank you @BrainstormCell ✨ this ALS family knows #Nurownworks - every ALS patient deserves to feel this caliber of hope; making the ‘final stages’ of this disease not feel so ‘final’… ⚡️💫 #MoreMomentsWithMyMama
Trends for United States
You might like
