Dr. Nadia Sethi @nadia_sethi
Director, Community Outreach and Engagement at ALS TDI. ALS we are coming for you. Widowed by ALS and still fighting it. Views expressed here are my own. als.net Joined September 2019-
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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
Thank you @ALSTDI for an incredible discussion and tour this morning highlighting your work in ALS drug discovery and scientific research! We are thankful to partner in the quest to #endALS together. #livelikelou #alstdi #ALSresearch #lougehrigsdisease
May 1, 2024 (4PM PT | 7PM ET) Register: everythingals.org/events #EndALS #EverythingALS #ALS
🗓️💻 Are you registered for our webinar May 8th? Join us for an overview of the ALS Better Care Act. REGISTER TODAY! ➡️ us06web.zoom.us/webinar/regist…
Letting my dad do my makeup #dad #fail #makeup #makeover #als @patricktabeauty @Weleda @drunkelephantjp @nudestix
Join us every Friday at 1 ET for an open discussion on all things ALS! Bring your questions or just hang out and enjoy the conversation, we would love to have you! Visit officehoursals.com for more information!
There are so many incredible events happening this ALS Awareness Month to support ALS research at ALS TDI! You can learn more about them and find one near you here: als.net/als-events/upc…
Patient advocacy and drug development…
Looking forward to @jacksonlab and @ChanZuckerberg's Engineering Induced Pluripotent Stem Cell symposium, highlighting genome editing technologies in #iPSC neurological disease modeling methods. Join me May 6th: jax.org/iPSC2024
This ALS Awareness Month, join us for the Fight ALS Film Fest hosted by ALS TDI and @HerALSStory. Our emcee for the events will be @sunnystrongals and thank you to our event sponsor @MTPA_US!! Register to join us here: als.net/alsfilmfest
Yesterday I had some visitors from the Babson College @phidelt chapter. Lou Gherig was brother in Phi Delta Theta in his days at Columbia University. It was great to be in a fraternity atmosphere again even though I was in a different fraternity.
People say to wear what makes you feel good...and today, I feel great 😍 Happy Monday, my friends! #alstdi #healinginprogress
Join us for another great #weeklywebinar on this Thursday 4/25 with Drs. @MeritCudkowicz and @PaganoniMDPhD @ALSTDI @alsassociation @iamalsorg @NEALSConsortium @LesTurnerALS @MDAorg @everything_als @alsone_official Register: partners.zoom.us/webinar/regist…
Featured Job Post: The National Institutes of Health's National Institute of Neurological Disorders and Stroke (NINDS/NIH) in Bethesda, Maryland, is offering fellowships. bit.ly/43ICe10
Our paper on developing CRISPR gene therapy for #C9orf72 FTD/ALS is out in @PNASNews - check it out! pnas.org/doi/10.1073/pn…
Looking forward to listening to this recording! #ALSMNDWithoutBorders
Looking forward to listening to this recording! #ALSMNDWithoutBorders
Join ALS Canada, on May 2 at 1:00 pm ET, for ALS Clinical Trials Unboxed. This month, Erin Fleming, Vice-President, Research and Development at ProJenX will present on a Phase 1 clinical study to evaluate prosetin for ALS. To register for webinar, visit bit.ly/448mOTY.
At Wave we are unlocking the broad potential of RNA medicines, and pioneering #RNAediting to access new areas of disease biology its a critical part of this goal. Read below to learn about the potential of RNA editing and our clinical program with data expected in 2024. $WVE
At Wave we are unlocking the broad potential of RNA medicines, and pioneering #RNAediting to access new areas of disease biology its a critical part of this goal. Read below to learn about the potential of RNA editing and our clinical program with data expected in 2024. $WVE
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
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.
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.
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.
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
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.
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.
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.
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)
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
Mandi @RunningMama0522
2K Followers 1K 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
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!
Jean C9orf72 @Jeanc9orf72
1K Followers 856 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
Deb Paust @PaustDeb
1K Followers 724 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
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.
Vicki Edwards @VickiEdwar96797
1 Followers 11 Following
Steven Richard @str100670
27 Followers 340 Following
𝙼𝚊𝚢𝚎 𝙼.. @nowmayemusk9
38 Followers 1K Following Bestselling International Author #AWomanMakesAPlan 📖Doctor of Dietetics 👩🎓 Supermodel 😉💃 #ItsGreatToBe75 Agents⬇️
Brian Donovan @CheckBd
8 Followers 70 Following Diagnosed with ALS in 2024, but embracing hope. A proud husband, dad, and granddad, believe in future breakthroughs and cherish every family moment.
Edna @ednagilbreth33
735 Followers 3K Following
Dr. T.R. Raju @TRRaju1
3K Followers 1K Following Director of Research at Sankara Academy of Vision. Sailed through JIPMER, ANU, Harvard, University of Sydney and NIMHANS. Expertise in #ALS and #VISION
Joel Placito @Jplacit00
0 Followers 39 Following
Andy Greenspon @andyman344
334 Followers 2K Following Researcher in quantum physics. Interests in science, policy, philosophy, and anything that can amuse to no end.
Andrea Rudnik @speductr
148 Followers 829 Following Mom to 5, Grandma to 7, Episcopalian, retired VI teacher, #TeamBrownsville co-founder , serving asylum seekers in our border cities of Brownsville/Matamoros
Elon Musk @ElonMusk0170
12 Followers 505 Following CEO-Twitter, SpaceX🚀, Tesla🚘 Founder-The Boring Company 🛣️ Co-founder-Neural-ink, OpenAl 🤖
Jose Laphit @jlapiz93
78 Followers 323 Following Milanesa 🇦🇷y PB&Jelly 🇺🇸. “ Jack of all trades. Master of None”
Torsten Weidauer @ich_tori2105
0 Followers 23 Following
Julie Suarez @epjjule
5 Followers 187 Following Wife,corgi mom,stepmother,aunt,baby sister,cousin and friend determined to help beat #ALS.Army brat! Texan (kinda).#ALSWarrior #EPSTRONG #GEAUXTIGERS
𝙼𝚊𝚢𝚎 𝙼.. @Nowmaye
40 Followers 219 Following Bestselling International Author #AWomanMakesAPlan 📖Doctor of Dietetics 👩🎓 Supermodel 😉💃 #ItsGreatToBe75 Agents⬇️
Professor Benedict D .. @BenedictNeuro
3K Followers 4K Following Neurologist. Professor. Director of @InfectNeuroLab- working on CNS Infections. MGH/HMS. Vice Chair @Encephalitis. Educator.
Yash Kulkarni @Y2k1403
0 Followers 73 Following
Fazlı @fazlibesli
12 Followers 228 Following
gina Gibson @ginaGib68993499
107 Followers 87 Following
Zack Wagner @ZackWagner90623
131 Followers 3K Following
Babucarr jobarteg @Babucarrjo5589
34 Followers 2K Following
David Kilgannon @david_kilgannon
1K Followers 987 Following Books, history, & health policy. All opinions my own, except RTs.
piroz @piroz
122 Followers 480 Following
Amy Lynn DelFratte @suzabella603
67 Followers 100 Following Experienced P2P fundraising professional with a demonstrated history of working in the non-profit organization management industry.
Koolway Sports @Koolwaysports
1K Followers 4K Following Custom designed coats and outerwear for individuals in wheelchairs, to include unique custom clothing and products for our able body clients.
Telles @Telles869394025
37 Followers 2K Following
Benjamin Lee @Benjami89232967
47 Followers 145 Following
Patients United2EndMN.. @united2endmnd
467 Followers 73 Following We are a group of patients, working to support the drive for a cure for MND.
Tewheasm @tewheasm91598
35 Followers 2K Following
Chris McNeil @mavrik2021
12 Followers 30 Following
Harper @Harper024761550
29 Followers 2K Following
maye musk✪ @maye_musk_mm
83 Followers 1K Following Bestselling International Author #AWomanMakesAPlan 📖Doctor of Dietetics 👩🎓 Supermodel 😉💃 #ItsGreatToBe75 Agents⬇️
Lisa crypto official @Margaretofficry
153 Followers 1K Following I'm Lisa from Britain am in financial growth institute, also a trader in binary/Bitcoin mining and other crypto currencies,
Shavonafloy Financial @shavonalfloydfx
658 Followers 5K Following l help folks in the financial service learn how to make High income with NO LEADS. Click my below receive a FREE GUIDE. ASK ME How
BTS Army @BTSArmy26035
85 Followers 327 Following It a painful thing that my fans no longer believes in me,I am sending this message to whosoever that's using my picture to deceive my fans and also fake fans cl
Michael @epistudent24
213 Followers 526 Following MPH Epidemiology student. I play with needles in a cancer center lab. Vegan 🌱
Sue Nelms @SueNelms1
267 Followers 622 Following These days a full-time carer and Anglican Licensed Lay Minister. Before that did various things totally unrelated! Not always entirely sensible!
Jen Hopkins @JenhopHopkins
327 Followers 100 Following
deliman62 @deliman62
4 Followers 36 Following
Roger Andre Meiling @RMeiling
107 Followers 180 Following
Laura Andreasen @Laumarie5
40 Followers 432 Following
Fergal Waldron @FergalWaldron
436 Followers 484 Following Advanced Research Fellow @aberdeenuni | MND/ALS & neurodegenerative diseases | Clinical heterogeneity | Immunity & neuroinflammation | Genetics | Data synthesis
Kelsie Snow @kelsieswrites
61K Followers 1K Following Storyteller, writer, podcaster @sorryimsadpod, ALS advocate, widow, mom, dual citizen (🇨🇦🇺🇸). Instagram & TikTok: kelsieswrites
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.
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.
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
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.
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
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
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.
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.
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)
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
Mandi @RunningMama0522
2K Followers 1K Following
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
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
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!
Jean C9orf72 @Jeanc9orf72
1K Followers 856 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
Deb Paust @PaustDeb
1K Followers 724 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
Martina de Majo @MartinadeMajo
212 Followers 411 Following Alien with Extraordinary ability, Neuroscientist, love singing & eating. Opinions are mine.
Jacqueline Frei @JacqFrei
13 Followers 70 Following
Vicki Edwards @VickiEdwar96797
1 Followers 11 Following
Sensible Medicine @Sensible__Med
9K Followers 12 Following Sensible Medicine is a shared column featuring the voices of leading physicians, scientists and thinkers. We showcase ideas about all things medicine.
Brian Donovan @CheckBd
8 Followers 70 Following Diagnosed with ALS in 2024, but embracing hope. A proud husband, dad, and granddad, believe in future breakthroughs and cherish every family moment.
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.
Angela Kocot @GailaonEarth
371 Followers 743 Following mom of 3, geographer, community volunteer, humanist. Wife of ALS as of Fall 2021 / Winter 2022
Dr. T.R. Raju @TRRaju1
3K Followers 1K Following Director of Research at Sankara Academy of Vision. Sailed through JIPMER, ANU, Harvard, University of Sydney and NIMHANS. Expertise in #ALS and #VISION
Berry Consultants @BerryConsultant
616 Followers 13 Following We are a statistical consulting company specializing in innovative clinical trial design, Bayesian analysis, clinical trial execution, and software solutions.
Alberto J Espay @AlbertoEspay
8K Followers 630 Following #Neurology professor @uofcincy. Advocate of precision medicine in #Parkinsons & #Alzheimers. Cofounder of Regain to correct proteinopenia. Author #BrainFables.
Muscle & Nerve @MuscleAndNerve
2K Followers 12 Following Official journal of the American Association of Neuromuscular & Electrodiagnostic Medicine @aanemorg and published by Wiley @wileyneuro
AANEM @AANEMorg
3K Followers 1K Following American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM): nonprofit association dedicated to neuromuscular and EDX medicine.
Amir Ali, PharmD, BCO.. @amirsali101
585 Followers 360 Following USC Clinical Hem/Onc Pharmacist 💊, USC Adjunct Assistant Professor 👨🏻🏫, Founder of OncologySolutionsRx 🧬
Jose Laphit @jlapiz93
78 Followers 323 Following Milanesa 🇦🇷y PB&Jelly 🇺🇸. “ Jack of all trades. Master of None”
Aaron Goodman - “Pa.. @AaronGoodman33
135K Followers 424 Following Hematologist/Bone marrow transplanter at UCSD/educator - loves teaching all of Twitter medicine, husband+father/Guitar 🎸/Nirvana best band ever!/Loves tacos
Andrew Althouse @ADAlthousePhD
12K Followers 3K Following Statistician @Medtronic, studying novel statistical methods to do more efficient clinical trials; enjoy kettlebells, deadlifts, whiskey, craft beer & food
Smitsonian @Smitsonian_1
125 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!
Mike Lynch @MikeLynch27
4K Followers 366 Following @trailblazers Radio Network Host, Pre/Half/Post. Food is good.
Sheree Paolello WLWT @ShereeWLWT
32K Followers 3K Following Cincinnati girl💗Mom💗Animal Lover💗News Junkie💗Emmy & Edward R. Murrow award winning Anchor📺 Links/RTs aren’t endorsements. Opinions are my own.
Casey H @CaseyHerd
3K Followers 4K Following Traveling around the world with @BalletRising 🩰 & fighting #ALS alongside my sister ❤️
ERIC HOUSTON @ERICHOU85992456
22 Followers 36 Following
David Kilgannon @david_kilgannon
1K Followers 987 Following Books, history, & health policy. All opinions my own, except RTs.
Sick Cells @SickCells
3K Followers 661 Following National Advocacy Organization, Official Nonprofit.
Sherbet Lemon @belindavidal_
815 Followers 679 Following Raising awareness for Motor Neurone Disease after losing my Dad in 2007 #MND #ALS #LouGehrigsDisease #MotorNeuroneDisease
Tom Fitz 👨🏻�.. @_wobblewobble
518 Followers 428 Following I’m just a guy fighting ALS the best I can, tweeting about all things programming 👨💻and my toddler 👼
Roseann Hickman @RoseannHickma15
16 Followers 14 Following Real Estate Agent, Hairstylist, Wife, Mom, Mema and ALS Warrior. #endALS
Neil Emms @neil_emms
2K Followers 303 Following Father, (now retired) electrician, sub-par rock climber, okay skiier, world renowned specialist in the art of frustrated plier-chucking, living with ALS.
Matthew D @DopplerEffect93
287 Followers 152 Following Catholic, neuroscience, husband to a wonderful wife, loves to chat about science and history, opinions are my own
Michael @epistudent24
213 Followers 526 Following MPH Epidemiology student. I play with needles in a cancer center lab. Vegan 🌱
Lauren Broffman, PhD @laurenbroff
63 Followers 97 Following Health services researcher, lover of big data, hater of ALS
Sue Nelms @SueNelms1
267 Followers 622 Following These days a full-time carer and Anglican Licensed Lay Minister. Before that did various things totally unrelated! Not always entirely sensible!
Laura Andreasen @Laumarie5
40 Followers 432 Following
Fergal Waldron @FergalWaldron
436 Followers 484 Following Advanced Research Fellow @aberdeenuni | MND/ALS & neurodegenerative diseases | Clinical heterogeneity | Immunity & neuroinflammation | Genetics | Data synthesis
Timothée Olivier, MD @Timothee_MD
1K Followers 321 Following Oncology (sarcoma, H&N, CUP). Research=EBM, Epi, Policy #metaresearch @HUG_ge (Geneva, CH), @vkprasadlab (UCSF). Geneva Ethics Committee. No COI. Views mine.
Joanna M Wasielewska @jmwasielewska
523 Followers 2K Following Neuroscientist dedicated to improving drug delivery in #dementia | Big fan of #iPSC #BBB and everything #3D
UK MND Research Insti.. @UKMNDRI
551 Followers 58 Following A national network of MND centres that work together to understand how #MND happens, what treatment works, and test possible treatments in clinical trials.
Aakanksha Singh @Aakanksha_13
123 Followers 173 Following Neuroscience PhD student | ALS Neuroimaging Research Unit @UAlberta 🧠 | I love cooking, photography, plants, and sour beer.
DMartin @DrDDOM
2K Followers 2K Following #NewPI Assistant Prof @WaterlooBio. Study #autophagy & #lipidation in #neurodegeneration. Tweets my own. RT≠endorsement. Expect sci, food, & some cdnpoli
Vince Buffalo @vsbuffalo
15K Followers 2K Following Evolutionary genetics postdoc @UCBerkeley ♥s biology, running, probability+statistics, 🦀, fly fishing, backpacking. Author of book Bioinformatics Data Skills
Nicole @NurseColey
28 Followers 87 Following Certified Family Nurse Practitioner & School Nurse Teacher
Michelle Prickett @MPrickettMD
726 Followers 626 Following Wife/mother/physician/lifelong Chicagoan. Committed to making the world a better place one breath at a time. Views are my own.
Ryan @CureHDWeWontBe
147 Followers 383 Following 45 with Huntingtons disease. Bachelors in Finance. Did 12 Spinal taps in tominersen trial now in Sage. Advocating for $3 Billion annually to cure rare neuro.
Aparna Vasanthakumar @aprnav
125 Followers 705 Following Scientist 👩🏻🔬 : genetics/genomics; human and dog mom; AbbVie; my tweets are my own
Patients United2EndMN.. @united2endmnd
467 Followers 73 Following We are a group of patients, working to support the drive for a cure for MND.
DeepaK Kumar @Deepak13900
15 Followers 141 Following A Father & Husband..... symptoms onset since 2021 waiting for my Dx
@sarahkarpar I know, right. I’m not a fan of my travel chair for that reason. I like the chair that I use at home bc it has a feature that raises the chair up to peoples eye level so I’m not always looking up at everyone. We don’t have a van tho so I’m not able to travel with that chair. 😕
@TavaresSpeer I'm asking my doctor for a upgrade at clinic in May. My legs are starting to fall to side due to paralysis. This whole disease sucks.
We lost Kristin to the #ALS beast yesterday. She was w/her twins as they turned 20 last wk, fulfilling her wish to steer her boys into men. The grief over her lost life is so deep, yet I see her dancing in her cowgirl boots and hat in heaven now.
Viva day! Many thanks to Ammar Al Chalabi, and the wonderful clinical neuroscience team! Expressing gratitude for the amazing journey, overcoming challenges, unwavering support, and finally experiencing accomplishments. @AmmarAlChalabi @AhmadAlKhleifat @AlfredoIacoange
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
Thank you @ALSTDI for an incredible discussion and tour this morning highlighting your work in ALS drug discovery and scientific research! We are thankful to partner in the quest to #endALS together. #livelikelou #alstdi #ALSresearch #lougehrigsdisease
@fortelabs You’re absolutely right about that. Once kids get into high school, especially after freshman year, they start pulling away.
May 1, 2024 (4PM PT | 7PM ET) Register: everythingals.org/events #EndALS #EverythingALS #ALS
🗓️💻 Are you registered for our webinar May 8th? Join us for an overview of the ALS Better Care Act. REGISTER TODAY! ➡️ us06web.zoom.us/webinar/regist…
@NotSoVanilla There are a few disorders in other mammals that have differijg degrees of similarity to ALS in people. Dogs with SOD1 mutations get "canine degenerative myelopathy." There is a rare sporadic lower motor neuron disease in horses - Equine Motor Neuron Disease.
Such a pleasure to have known @BarriFalk and to have her legacy in our movement continue with the activism of her husband the brilliant and insightful Ronenn.
Many cheers to Ronenn Roubenoff for representing ETL, our movement for the millions globally at risk for inherited ALS and FTD, and his late wife @BarriFalk at the #WorldOrphanUSA conference!
Many cheers to Ronenn Roubenoff for representing ETL, our movement for the millions globally at risk for inherited ALS and FTD, and his late wife @BarriFalk at the #WorldOrphanUSA conference!
@Jeanc9orf72 @KickALS @alsadvocacy @End_The_Legacy It's impressive how fast you all are moving the dial with End the Legacy, Jean. In a very short amount of time, you have made familial ALS a very strong, cohesive, and important voice in ALS Land. Together we all will #endals
1/ What does a last-minute trip to to catch the total eclipse mean? It means all of the accessible locations are gone. That makes it easy to say no, but you also really want to make those memories. That’s okay, sometimes you can bring your own accessibility!
Letting my dad do my makeup #dad #fail #makeup #makeover #als @patricktabeauty @Weleda @drunkelephantjp @nudestix
Bring Your Child to Work Day 2024 is well underway at the NYGC! The group of future scientists kicked off the day with a beginner-friendly crash course on genomics before embarking on a tour of the Center and a lab activity
#2 we are the first to find, provocatively, that if you don't know you improve survival (OS) when you are approved, you are much less likely to improve OS in the long haul See this:
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