ALS Uncensored 🏴☠️ @ScottsFight
Scott Craig. ALS Uncensored podcast. Digital Artist. AI Student. Typing with my eyes. Living Impossible! #ALSUncensored #ALS #EyeGazeArtist #AI ALSUncensored.com Planet ALS, Tulsa, OK Joined September 2009-
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The mouth is a big source of problems in #ALS Excess saliva Not being able to brush/floss Biting tongue/cheeks Swallowing And the danger of choking/aspiration There are great dentists who understand the special needs of ALS. One more tool in the toolbox, and it’s good to be…
For all of the things I have adopted into my #ALS regiment, breath/speech therapy has probably been the highest return activity. Physical therapy is second. Feeding tube third.
For all of the things I have adopted into my #ALS regiment, breath/speech therapy has probably been the highest return activity. Physical therapy is second. Feeding tube third.
When I’m outside my house (and ESPECIALLY in a hospital) the number one rule is- Don’t leave Scott alone- The only exception to this was when I was in ICU and had my Tobii in front of me, and even then we were obnoxious about the importance of my access to it.
When I’m outside my house (and ESPECIALLY in a hospital) the number one rule is- Don’t leave Scott alone- The only exception to this was when I was in ICU and had my Tobii in front of me, and even then we were obnoxious about the importance of my access to it.
Who knew?
I just heard the term “ALS Lifestyle “ to describe living with late stage #ALS. I’m not really sure how I feel about what that implies, but it makes me anxious.
The idea of this is interesting to me, as a person with #ALS. I sit here and tie myself in knots, contemplating whether I should get a tracheotomy, and I wouldn’t hesitate to have a hole drilled into my head. 🤷♂️ neuralink.com/blog/prime-stu…
May 1, 2024 (4PM PT | 7PM ET) Register: everythingals.org/events #EndALS #EverythingALS #ALS
While we’re on the subject, eye gaze has been foundational in my ability to maintain a healthy quality of life. Along with my family and caregivers, none of this would be possible without @TobiiDynavox @TeamGleason and @PermobilUSA
While we’re on the subject, eye gaze has been foundational in my ability to maintain a healthy quality of life. Along with my family and caregivers, none of this would be possible without @TobiiDynavox @TeamGleason and @PermobilUSA
Are there any pALS that don’t have a story and picture like this? Maybe a few smarter/luckier ones. This is usually the precursor to a walker or a wheelchair. Here’s mine from 4 years ago.
Are there any pALS that don’t have a story and picture like this? Maybe a few smarter/luckier ones. This is usually the precursor to a walker or a wheelchair. Here’s mine from 4 years ago. https://t.co/Hs1oeGG5Do
Adaptation to the situation is the only path forward in #ALS and eye tracking and understanding how to use it is a critical component. However, eye gaze is intimidating for many and often unapproachable. This new series will attempt to help break down some of the myths and choke…
I’m having a dinner meeting with my caregiver team tonight. I’m now on year 6 with #ALS and level of my care becomes more involved almost daily. What should we be expecting or asking ourselves? There isn’t a lot of information out there. Should I share our agenda and notes?
ALS needs more of this. #ALS
You would think that building a hotel with ADA compliant rooms would be easy and economical. Most of the issues are in the bathroom, and I will NEVER understand the insistence of bathtubs. Add a few grab bars and they’re 3/4 of the way there…
Hey @Lions I need an @AlexAnzalone34 jersey in black please!
Hey @Lions I need an @AlexAnzalone34 jersey in black please!
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.
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.
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 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.
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
Shah Minokadeh, M.D. @MinoShah
4K Followers 734 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
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 TX DAD @AlsDads
2K Followers 893 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research 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.
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.
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
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
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
Mandi @RunningMama0522
2K Followers 1K Following
End ALS Now @EndALSNow
951 Followers 931 Following ▪Bri ▪I mainly amplify #ALS tweets ▪ALS=wretched, cruel, 100% fatal ▪RT=awareness, not agreement ▪🚫DMs🚫 ▪#EndALS ▪#SunflowerForSandy 🌻 ▪#RoseForJamie 🌹
Slousmar @SlousmaraNX1
0 Followers 54 Following
Demil Richter @DeMilRichter
33 Followers 264 Following
Corrine Furtaw @CorrineFur71836
65 Followers 5K Following
LeslieSammel @LesismoreWatson
2 Followers 44 Following
Gretta Kine @ki_gret
48 Followers 5K Following
Fight2EndALS @Fight2EndALS
15 Followers 68 Following
Demi Johnny @JohnnyDemi95682
11 Followers 741 Following
Illuminati Reachout. @Join_the_light
497 Followers 418 Following Trust the process, follow the light 🔺
MamieLeonard @VKZ0030952B0f
0 Followers 112 Following
Nenner @Nenner430220
1 Followers 173 Following
MND-SMART @mndsmart
1K Followers 990 Following Innovative UK MND clinical trial from Euan MacDonald Centre for MND research at @EdinburghUni. Designed alongside people with MND. Searching for new treatments.
Megan Fijal @megan_fijal
1 Followers 270 Following Crazy Momma who loves her family more than bacon! 💓 🥓
Elmira Chesebro @e_cheseb
74 Followers 5K Following
Gerson euzebio Gerson @Ge13341Gerson
409 Followers 983 Following
Emily Cerbone @Emmazi
369 Followers 725 Following Proud #AsianAmerican. Passionate about good food, travel & fitness. Supporter of #AnimalWelfare, #Veterans, #WomensRights & #ALS Advocacy. Opinions are my own.
Bob Orin @rorin57
40 Followers 162 Following
Brad Uptgraft @braduptgraft
168 Followers 37 Following
Rivka Jeschon @jesch_riv
73 Followers 5K Following
Grace D'Amore @Kahalaonapua
583 Followers 2K Following ALS supporting, cat loving mother of a beauty. I bleed BLUE, Biden 2024. I love dark & stormy days. Voracious reader, small friend circle. Hawaii no ka oi
Lucie Diangelis @DiangelisL37747
88 Followers 5K Following
ALS Northwest @ALSNorthwest
526 Followers 350 Following ALS Northwest provides support and resources for people living with ALS, their families, and caregivers.
Code_of_Kai @Code_of_Kai
6K Followers 3K Following #AIAugmentedArtist | #AIAugmentedWriter | Wing Chun kung fu Sifu (咏春師父). I've been creating art, writing, and practising martial arts for 1, 13, & 24 yrs.
Zenia Honer @honer_ze
30 Followers 5K Following
Sea turtle lovers clu.. @seaturtle_uk
378 Followers 5K Following 1👉 Welcome @seaturtle_uk 2 🐢 We share daily #Seaturtle Contents 3 🐾 Follow us if you really love Sea turtle
Ray Whitfield @RayWhitfield14
72 Followers 188 Following My journey with MND Make your life Extraordinary. Never Give Up. Smile and the world will smile with you. Keep smiling.
Torsten Weidauer @ich_tori2105
0 Followers 23 Following
Slstrat @SusanSt52860850
87 Followers 342 Following Mom watching her son slip away with @ALS, fighting and hoping for a cure. @NurOwn
notthatcute @sparktime1
125 Followers 212 Following
Ellie-may Grondin @GrondinMay77661
93 Followers 5K Following
Brian Louden @brilouden
125 Followers 41 Following
Dr Andrew Woodhead (A.. @WoodheadAndy
2K Followers 5K Following Hate all Prejudice, Kindness is a Must, Campaigner for Dementia, Mental Heath, AHP, Cancer, Palliative Care, CRPS, & Coproduction. All views are my own
Julie Suarez @epjjule
7 Followers 189 Following Wife,corgi mom,stepmother,aunt,baby sister,cousin and friend determined to help beat #ALS.Army brat! Texan (kinda).#ALSWarrior #EPSTRONG #GEAUXTIGERS
DeepaK Kumar @Deepak13900
15 Followers 141 Following A Father & Husband..... symptoms onset since 2021 waiting for my Dx
Sandeep Katara @KataraSan69870
0 Followers 35 Following
Lili Eshenbrenner @LEshenbren4195
51 Followers 5K Following
Elora Petrina @EloraPetri86790
57 Followers 5K Following
Rose Kemmerling @rose_kemmerling
388 Followers 570 Following the tweets find me || OC’20, UT’22 || Oozma Kappa || UMGCP’25 〽️
Theresa Burnham @CALobsterLady
584 Followers 1K Following Holistic fisheries scientist @UMaine. She/her
Elisabeth_3 🌻🍂 @Eli_on_3
2K Followers 2K Following Counseling Advisor for Student Doctors, love my 🐕🌊 #🟦 #BlueRibbonsforIsrael. ALS SUCKS! #IAmALS #Nurown #IStandWithIsrael #4MoreYears
Farah M 🇩🇿🇧�.. @farah_y_m99
20 Followers 115 Following PhD student @neuroshef studying DNA/histone methylation and one-carbon metabolism in MND/FTD | Previously @IHAatUCL 🪰 and @KingsIoPPN
Delisa Hames @hames61448
83 Followers 5K Following
tom miller @molemanz
24 Followers 486 Following Cincinnati Bearcats fan. Diagnosed with ALS in October of 22’
Mindy Uhrlaub @MindyUhrlaub
159 Followers 169 Following https://t.co/4uNkZvnKfp. Author, Unnatural Resources. Familial ALS Warrior.
Brianna Born @BriannaBor74951
69 Followers 5K Following
Fearn Hocke @FHocke71672
89 Followers 5K Following
galcoolest @Galcoolest
64 Followers 1K Following
Shannon Schmeeckle @ShannonSch82272
65 Followers 5K Following
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.
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.
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 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.
Sarah Nauser @SarahNauser
12K Followers 517 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
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.
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
Shah Minokadeh, M.D. @MinoShah
4K Followers 734 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal ALS
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.
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.
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 TX DAD @AlsDads
2K Followers 893 Following USAF Vet, Father of 4, background in Healthcare Management and Disaster Response Management, ALS (pALS) Advocate (views & comments are my own)
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
Steve Gleason - "Live.. @SteveGleason
199K Followers 249 Following New Instagram - @stevegleasonofficial Dad. Husband. Inspiring all people to live purposefully, despite tragedy. I tweet with my eyes. Embracing 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.
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.
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
Neurology Journal @GreenJournal
92K Followers 1K Following Neurology is the most widely read and highly cited peer-reviewed neurology journal. It is the medical journal for the American Academy of Neurology.
The Freemasons’ Com.. @MasonicFind
24K Followers 583 Following Freemasonry | Esoteric Knowledge | Timeless Advice💡Join our private community by clicking the link below 👇
Betty’s Brigade Fou.. @No_More_ALS
345 Followers 530 Following We Are… the Betty’s Brigade Foundation ________ We Are… Fighting ALS Together _________________ - to raise ALS awareness & funding
Emily Cerbone @Emmazi
369 Followers 725 Following Proud #AsianAmerican. Passionate about good food, travel & fitness. Supporter of #AnimalWelfare, #Veterans, #WomensRights & #ALS Advocacy. Opinions are my own.
Boston Dynamics @BostonDynamics
315K Followers 0 Following
Diogenes MR. Bean #1 .. @Zionisthumanist
300 Followers 781 Following All politic labels people use can wear & consume them.
EWB OkState @EWB_OkState
155 Followers 68 Following Engineers Without Borders, Oklahoma State University Student Chapter. Follow us for updates about everything EWB!
Osiel Mendoza @OCLMendoza
955 Followers 837 Following Never Give Up. @uoregon Sports Biz Alum. ALS advocate. TG. #LG4Day
Mike Lynch @MikeLynch27
4K Followers 366 Following @trailblazers Radio Network Host, Pre/Half/Post. Food is good.
ᴊᴀɴɪᴇ🫧 @plainJaniexx
2K Followers 2K Following you can’t have everything, where would you put it? #GoTiges #FightMND #FuckALS #Fight4Jon 💛🖤
James Clarke @Clarkiejc1979
399 Followers 218 Following Fighting hard against MND insta: jamesclarke_kf
Mihir @terminal_coder
147 Followers 210 Following 36. Programmer, developer. Living with ALS (Amyotrophic Lateral Sclerosis). Grateful for each day.
Chris McDermott @profcjmcdermott
1K Followers 496 Following Professor of Translational Neurology, SITraN, University of Sheffield. Co-Director, Sheffield MND Care and Research Centre. #MND #ALS Specialist
Lee Morrison @LeeMorrison2022
345 Followers 887 Following Disabled, ALS fighter, power chair, USMC & Army Veteran, Book seller on AbeBooks @ https://t.co/pFVnC80NOW NO DM!!!!! You WILL be blocked!!
Santiago @SantiagoWeek13
140 Followers 103 Following These 3 remain: faith, hope & love. The greatest is love. Love never fails. #photography #running #triathlon #refugees #EndALS
Rain Consulting Group @RainConsulting
221 Followers 48 Following MPS Scholar in Transformation Leadership & Fierce Advocate for Neurological Diseases.
Noland Arbaugh @ModdedQuad
87K Followers 14 Following P1. Cyborg. Neuralnaut. Skynet Progenitor. Taurus.
Keith Mayl @DrMayl
535 Followers 659 Following MD, PhD. Expertise in neurodegeneration with a focus on ALS-FTD. Medical Director at Servier.
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.
SnooksBottomBarbecue @BottomSnoo6833
1K Followers 120 Following We are a TX Barbecue joint operating out of the back of a car wash in Western Colorado. 1 shipping container kitchen and 6 Moberg Smokers. IG - snooksbottombbq
Neuroscience Institut.. @neuroshef
4K Followers 916 Following Tackling the biggest challenges in neuroscience by bringing together #SITraN and researchers across medicine, science and engineering.
Indu Navar @indunavar
367 Followers 145 Following
Active Against ALS @ActiveALS
363 Followers 323 Following Active Against ALS is a nonprofit whose mission is to raise funds for cure driven research while being Active and creating a compassionate community.
MND Iceland @IcelandMnd
189 Followers 180 Following
UMich ALS Clinic @umich_ALS
146 Followers 198 Following The U-M ALS Clinic seeks to maximize independence & mobility of patients with a wide range of ALS-focused scientific studies & research. http://t.co/cps193vC9m
gian 🏴☠️ @giansegato
6K Followers 457 Following data → ai @replit • founded @uniwhere (acq'd) // hacker, tinkerer, misfit
Melanin Children Matt.. @ChildrenMelanin
354 Followers 322 Following Serving children, healing families and educating society; while enhancing awareness surrounding childhood rare diseases pedi-ALS/sptlc2 & resources for autism
Grace Vinton @HITeaWithGrace
6K Followers 2K Following Healthcare Pulse + Thought Leadership Thirsty + Serial Connector + Big Data Geek + Patient Advocate + ENFJ + Extreme New Englander + Green M&M + Own Opinions 👌
Dr. Amy Price @AmyPricePhD
2K Followers 2K Following
James - Diagnosed Dad @diagnosed_dad
583 Followers 157 Following 👋🏻 A Dad living & dealing with MND/ALS
NeurologyLive® @neurology_live
9K Followers 675 Following Delivering healthcare professionals treating neurological diseases quality and relevant information to help achieve the best patient care possible. #MindMoments
Charles Murray @charlesmurray
127K Followers 303 Following Husband, father, social scientist, writer, Madisonian. Or maybe right-wing ideologue, pseudoscientist, evil. Opinions differ.
RDLA @RareAdvocates
6K Followers 3K Following A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Beth Gabel @beth_gabel_27
73 Followers 53 Following #ALS warrior. Mom of 2 teenage boys. Diagnosed April 2023. ALS advocate and mentor. Love heavy metal music, painting and nature
UC Davis Physical Med.. @UCDavisPMR
739 Followers 121 Following Improving health, function, and quality of life through compassionate care, state-of-the-art education, and innovative research
Geoff @Gebinh1
15K Followers 13K Following MND WARRIOR. diagnosed with motor Neurone Disease Did love street food.😢 But loves to travel. Takeing one day with my amazing wife at time . SURPORTS NHS.
Tim Green @timgreenbooks
3K Followers 793 Following Tim Green: NFL player; @NYTimes bestselling author;TV host/commentator @FOX, @NFL, GMA, @CourtTV, @ABC, @NPR; lawyer/coach/father of 5; newest book Final Season
🚴🏻♀️🧠.. @DPT2Go
5K Followers 1K Following 🎓 🎙 Founder @ConcussionCornr ® Academy & Podcast. Proud @APTAtweets Nat'l Spokeswoman. ≠MedAdvice #FOAMed #Concussion #DEI She/Her🇵🇷🏳️🌈🇺🇸 ✊1st Gen
Coya Therapeutics @CoyaTx
2K Followers 94 Following Coya (Nasdaq: $COYA) is unleashing the power of Tregs to tackle neurodegenerative and autoimmune diseases.
MRC PPU @mrcppu
3K Followers 1K Following The MRC Protein Phosphorylation & Ubiquitylation Unit is a world leader in finding the causes of neurodegeneration, cancer, hypertension & immune disorders
𝐀𝐫𝐩𝐚𝐧 .. @DrArpan100
2K Followers 2K Following Neurologist with an interest in studying the role of kinases in ALS/MND @mrcppu. SAP member @MNDScotland. Trustee @PhysicsPartners.
Dr Puja R. Mehta 🩺.. @DrPujaM
1K Followers 2K Following Wellcome clinical PhD fellow at Queen Square Institute of Neurology @FrattaLab 🧪 • Motor neuron disease researcher 🧠 • Neurologist 🩺 • @Cambridge_Uni alumna
Deb Bellina @BellinaDeb
100 Followers 155 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
Paul Wicks @PaulWicks
5K Followers 4K Following Paul Wicks, PhD. Vice President of Neuroscience at Sano Genetics
Nick Goldup @NickGoldup1
1K Followers 1K Following Chair and Chief Operating Officer of the Wheelchair Alliance CIC
Abram Bieliauskas @AbeBiel
242 Followers 534 Following Fighter for patients, better healthcare, innovation & more cures | Biopharma policy | @LSEPublicPolicy grad | LGBT Ohioan | Tweets/opinions my own.
Mary-Louise Rogers @MLRogers123
349 Followers 348 Following MND&NR Lab Head, Flinders University. Research describing urinary biomarkers and novel treatments for ALS/MND. Opinions are my own. @flinders @flindersHMRI
Jen DiMartino @JennyDiMar
121 Followers 196 Following Executive Director ALS ONE @alsone_official My tweets • My thoughtsHow was Jazz Fest friends? So many great performances, but I think the best was the absolutely perfect weather. My plan was to go to all 8 days of JF, there is so much love! But Life rarely goes as planned. I was pissing on myself all day Saturday, but I was back on Sunday & I…
We must attack ALS the way ALS attacks us - heterogeneously
@ScottsFight @TeamGleason @PermobilUSA We love to see your work being appreciated & making a difference Scott.
After 20 weeks, NurOwn resulted in significant changes in 16 neuroinflammation biomarkers, among others. See why that could be important: bit.ly/3WnYbAC #ALS #AmyotrophicLateralSclerosis #ALSDisease #ALSTreatment #ALSResearch
I was so depressed and frightened after my diagnosis of #MND and soon became disabled. I wanted to die and if #AssistedDying had been legal I wouldn't be here now. I would have missed the best years of my life and my children would have grown up without a mother. #JustSaying
The US Congressionally Directed Medical Research Programs (CDMRP) ALSRP funding program specifically supports impactful research to develop ALS treatments. Open to international applicants Deadline for Letters of Intent - June 18, 2024 cdmrp.health.mil/alsrp/default
In the midst of ALS I realized that the word "patient" also meant to sit quietly and wait. It had never bothered me before then but I couldn't unfeel it after that. I still avoid using the term when I can. #impatient #EndALS
@ScottsFight Thanks for explaining your comment. Best wishes Lee
@ScottsFight Apparently we agree about the contents of the article…….
@ScottsFight For clarity in my previous post I should have said “article title” vice “article.” If that is your point, then you are correct.
@ScottsFight @EndALSNow @ALSTDI Can you share tips on software/devices needed to create art? Someone I know is an artist and was recently diagnosed. Looking to help her connect with other ALS artists. Thank you 🎈
The @ShrineBowl had a record number of draft picks this year (57), most in its 99 year history — major growth for the event.
So happy for our 57 Draft Picks this year (and excited for the many UDFAs who will make NFL rosters) 57 is the most draft picks EVER for the @ShrineBowl in 99 years of the event 24% increase from last year too Proud of our team’s great work all year long! #ShrineBowlWhosNext
@kjmark @HaterAls @MinoShah @FDACBER @DrCaliff_FDA @US_FDA @RepLBR @rosadelauro @janschakowsky @RepAnnaEshoo @RepMikeQuigley @lisamurkowski @SenGillibrand @SenCoonsOffice @SenatorDurbin @SenatorBraun The FDA is so sure that no one in their family will be affected by the ALS. That 's why they behavior is inhumane and the Nurown AdCom was criminal. No one challenges them, they can do whatever they want to. We just continue supporting each other and that's it.
Data suggest that certain patients may respond to mesenchymal stem cell therapy while others derive no benefit from the treatment. bit.ly/4d1StKK #ALSDisease #ALSTreatment #ALSResearch #StemCellTherapy #AANAM
Warning: Websites and social media are full of claims with high promises for ALS/MND treatments. Read about ten red flags you should watch for from #ALSUntangled ow.ly/8YN850Q1rFk Protect yourself and others from the spread of misinformation. #ALSMNDWithoutBorders
When "activism" merges with narcissism, it's less about the cause and more about the ego.
B/c of weak hands, trying out the chin controls for my wheelchair. Works well with lots of space, but joystick is touchy and hard to maneuver through doorways and other tight spaces. Hopefully gets easier w/ some practice. #ALS
May 1, 2024 (4PM PT | 7PM ET) Register: everythingals.org/events #EndALS #EverythingALS #ALS
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