EndALS @FinishALS
Momentum is building. Let’s #EndALS. Not an organization or charity. Just a Twitter account. Joined May 2019-
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Detection of pTDP-43 via routine muscle biopsy: A promising diagnostic biomarker for amyotrophic lateral sclerosis onlinelibrary.wiley.com/doi/full/10.11…
Stathmin 2 is a potential treatment target for TDP-43 proteinopathy in amyotrophic lateral sclerosis link.springer.com/article/10.118…
Very tough to glean anything from mouse studies, but they do provide interesting reads: bpspubs.onlinelibrary.wiley.com/doi/full/10.11…
With the news of another failure - many observations about heterogeneity. No sharing of the logical and , indeed, likely scenario that we are intervening in this process entirely too late, and should always be testing interventions , at least in part, in earlier stages.
It was a privilege to be involved, even in a small way, in this important ALS/MND research. 🔬 Summary: Mitochondria (cell powerhouses) affect how long people with ALS/MND live with the condition. One type even seems to protect nerve cells, helping people with ALS live longer.…
It was a privilege to be involved, even in a small way, in this important ALS/MND research. 🔬 Summary: Mitochondria (cell powerhouses) affect how long people with ALS/MND live with the condition. One type even seems to protect nerve cells, helping people with ALS live longer.…
Clene Provides Update on ALS Clinical Development FDA Meeting globenewswire.com/news-release/2…
To all the researchers trying to end ALS who gathered for the symposium - and those who didn’t - thank you. You’re hard work trying to save lives probably isn’t commended enough.
I believe the current early stage pipeline in ALS is transformational, hope we can help speed up getting to tomorrow. nature.com/articles/s4157…
I am so excited for @synapticure to bring CNM-Au8 to those who never had access before. This will be the first virtual EAP and is a big moment for all of us living with ALS. If you want the chance to be a part of the EAP...
Not an “old man’s disease”.
Not an “old man’s disease”.
New Technique Advances Study of Neurodegenerative Disease Lipids / Lipids are a diversified class of biomolecules with a wide array of functions, from energy storage to regulation of fundamental cellular processes miragenews.com/new-technique-…
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/J0eu50Q1rA5 Protect yourself and others from the spread of misinformation. #ALSMNDWithoutBorders
Integrated analysis of transcriptomic and proteomic alterations in mouse models of ALS/FTD identify early metabolic adaptions with similarities to mitochondrial dysfunction disorders tandfonline.com/doi/full/10.10…
@VPResearch_ALS @myalsworld Benefits of early combination drug treatment in patients with Amyotrophic Lateral Sclerosis: A Case Series virtual.oxfordabstracts.com/#/event/4334/s…
From Corey’s family: Please see the below press release for the Promising Pathway Act. If you’d like to share your story as a patient, family member, or caregiver - please submit by 5pm on Oct. 19th to [email protected]
On October 26th, the Senate Aging Committee will hold a hearing on the Promising Pathways Act, which includes a pathway for conditional approval. I hope you take a minute before 5 pm on the 19th to share with the committee your story by emailing [email protected]
The main interest in clinical trials is usually functional capacity measures, but findings support continued use of muscle strength measurements. buff.ly/3ZWqTZk #als #amyotrophiclateralsclerosis #alsdisease #alstreatment #alsresearch #clinicaltrials
Can anybody in research chime in and offer perspective on this? Although it does seem like we’re using some of these more often as of late.
Can anybody in research chime in and offer perspective on this? Although it does seem like we’re using some of these more often as of late.
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
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.
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.
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.
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
Sarah Nauser @SarahNauser
12K Followers 516 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
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 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
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for 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
Dr. Nadia Sethi @nadia_sethi
2K Followers 2K Following 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 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)
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
Hande Ozdinler @DrOzdinler
27K Followers 716 Following Neuroscientist, Scientist, Mother, Poet, Press member, Inventor of OzdinART Our research will help end ALS, HSP and PLS.
Mandi @RunningMama0522
2K Followers 1K Following
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.
رجل @abdhali25
54 Followers 928 Following
Hani Nadhir @NadhirHani5226
9 Followers 164 Following
S cromer @Scromer6
0 Followers 657 Following
Fazlı @fazlibesli
12 Followers 228 Following
ALS Northwest @ALSNorthwest
526 Followers 350 Following ALS Northwest provides support and resources for people living with ALS, their families, and caregivers.
Mihir @terminal_coder
146 Followers 203 Following 36. Programmer, developer. Living with ALS (Amyotrophic Lateral Sclerosis). Grateful for each day.
colorcrimes @colorcrimes
172 Followers 430 Following CoFounder/ @SullenClothing @pardytime and big time LA RAMS fan!
Donna Smythe💙💙�.. @Donnas929
3K Followers 4K Following 💙🌊☮️✌️🤓💎🌬 Gulf War Veteran Lifelong Liberal Old Hippie Proud Girl Mom and Gran Vaxxed and Boosted #BlueCrew
Jen Hopkins @JenhopHopkins
327 Followers 100 Following
Ogzbcr @Ogzbcr3
1 Followers 66 Following
Harriet 😍 @HarrietL780
1 Followers 189 Following Аdvеnturous lady sеeking аdult eхcitеment, no strings attachеd
Alaa700 @Alaa7005
13 Followers 269 Following
Tim H C9orf72 @sru89
951 Followers 403 Following SUCCESS comes before WORK only in the dictionary..... COURAGE is being scared to death but saddling up anyway Carpe Diem Never go quietly into the night
valdemic @1curiousV
235 Followers 1K Following Angel Mom, Proud to be American, I ❤️ the USA Military, I am here to learn, #EndOverdose, #MAGA, #BacktheBlue
Ashley Hicks @ashley_hic46278
92 Followers 3K Following
piroz @piroz
122 Followers 480 Following
christine @Cris780195
1 Followers 44 Following
Senda @Senda63078663A
48 Followers 102 Following
EVANGELOS KISKINIS @EKiskinis
43 Followers 157 Following
Brian Donovan @CheckBd
8 Followers 69 Following Diagnosed with ALS in 2024, but embracing hope. A proud husband, dad, and granddad, believe in future breakthroughs and cherish every family moment.
SR @csricks40
93 Followers 397 Following
Radiator Rick @radiatorrick1
128 Followers 187 Following
Della Larsen's Class @LarsenClass
169 Followers 73 Following
Fernanda Cardoso @DrFeCardoso
437 Followers 520 Following Senior Research Fellow @IMBatUQ | PI @Cardosolab | Neuropharmacology | Pain | Neurodegeneration | Ion Channels | Venom research | Mentor | Mother and Wife
Lisa Whittaker @LisaWhi71198001
52 Followers 295 Following Christian, Conservative Republican, I believe in the Constitution of the United States
LaurieJean @LaurieJ87893766
988 Followers 865 Following Relocated from NY to NC. Sober living, NY Mets and Jets fan, Retired, Married, Mom of 2 boys. My faith will not waver. #recoveryposse #MetsTwitter
Tommy Maestas @tommym8
371 Followers 1K Following Obsessed with teaching others how the Central Nervous System controls movement.
Christian Rubio @ichristianr_
878 Followers 2K Following Digital strategist, community veteran, advocate for education to improve health outcomes working to advance treatments in CNS diseases. Tweets are my own!
Dan Marlow @mung_nation
103 Followers 156 Following Trying to be the person I know I can be. ALS changed my life. Surrounded by girls.
Sara @AspariSara98411
6 Followers 23 Following
Marie @SharonJ58877516
2K Followers 5K Following
Renee Barber @ReneeBa82117482
56 Followers 530 Following
glenn grant @glennggrant
256 Followers 1K Following married to a wonderful lady and father to Lucy the corgi, football and hockey fan(go Habs)...music lover... #ALS warrior
Mohamed amine Zr @AmineZerdo30585
12 Followers 105 Following
满雪兰 @junchen50983731
0 Followers 26 Following
Chris McNeil @mavrik2021
13 Followers 30 Following
penny hughes milner @pchmilner
52 Followers 159 Following
Slin @nils400045
1 Followers 156 Following
Anna Jane Dreyer @AnnaJaneDreyer
150 Followers 266 Following Postdoc in the Department of Clinical Neurosciences @Cambridge_Uni | NIHR @ARC_EoE DEM-COMM Dementia Fellow | Neuropsychologist
Jodie Warwick-Smith @JodieKatSmith
4 Followers 360 Following
justsaxxo @christiankipye1
1 Followers 12 Following
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
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.
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.
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.
Leanne Yacyshyn @leanne_yacyshyn
9K Followers 1K Following Wife. Mom of 2 teens. Former elementary school teacher. Canucks fan. Living with ALS and waiting for the day it is no longer terminal.
Mayuri Saxena @Mayuri_Saxena
9K Followers 607 Following 39yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48 https://t.co/vibJSKdIl4
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.
Sarah Nauser @SarahNauser
12K Followers 516 Following Dominating ALS one day at a time. “Love the life you live and live the life you love” Go Royals! #FightLikeAGirl
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.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
Dr. Nadia Sethi @nadia_sethi
2K Followers 2K Following 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 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)
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
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
Hande Ozdinler @DrOzdinler
27K Followers 716 Following Neuroscientist, Scientist, Mother, Poet, Press member, Inventor of OzdinART Our research will help end ALS, HSP and PLS.
Mandi @RunningMama0522
2K Followers 1K Following
Mitochondrial Medicin.. @Mito_Therapy
6K Followers 1K Following Dario Brunetti PhD | mitochondrial dysfunction in genetic disease and aging | stem cell | small&large animal models | In Utero Fetal Gene Therapy
Rothstein Lab @Rothstein_Lab
974 Followers 429 Following Dr. Jeffrey Rothstein is a professor of neurology and neuroscience @HopkinsMedicine and is the founding director of @packardcenter. (trainee run)
Bahareh Ajami, Ph.D. @BaharehAjami
1K Followers 1K Following Immunologist by heart,#microglia, Immigrant, mom, Triple Negative breast cancer survivor “hopefully”, Opinions mine. #WomenLifeFreedom #AD, #ALS, #PD
Nate Methot @a_life_derailed
2K Followers 777 Following Author of "A Life Derailed: My Journey with ALS", a memoir 39 y/o living with #ALS since 2011. #EndALS #empathy #awareness Memoir and blog at https://t.co/lSqWxLqUXm
Carolina Parra Cantu,.. @caropact
788 Followers 570 Following PGY-1 @WashUNeurology 🧠/ #ALS Research Fellow at @MayoClinic / EMIS 36 🇲🇽
Synapticure @synapticure
4K Followers 505 Following Personalized virtual clinical care is finally here for neurodegenerative diseases like Alzheimer's and related Dementias, Parkinson's, ALS, and Huntington's
heavy_sara @heavy_sara
1K Followers 235 Following ģ𝕒Ｍέ𝐑 * ALS fighter * twitch streamer * ĤⓊмⓐ𝐍 & 𝕕𝕠𝕘 mom * whiskey drinker * 𝖒𝖊𝖙𝖆𝖑𝖍𝖊𝖆𝖉
Your ALS Guide @YourALSguide
386 Followers 64 Following A user-friendly website where people living with ALS, caregivers, and professionals can find educational guides, expert video clips, resources, and more...
Jean C9orf72 @Jeanc9orf72
1K Followers 855 Following C9orf72 gene carrier - advocate and leader for our community. Founding Chair, Genetic ALS & FTD: End the Legacy
Ujc @Ujwal_uc
231 Followers 215 Following
JohnDriskellHopkins @johndhopkins
9K Followers 1K Following Musician, Actor, Husband, Daddy, Biker, Georgian, Water Lover, Founding member - Zac Brown Band - NEW Christmas Album available on my site.
Arjun Singh @arjunsing
154 Followers 201 Following HR professional, Technology enthusiast , Humane , Networker Opinions are my own and not the views of my employer or any affiliations that i may have
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.
Kaya Matson @kaya_jane
347 Followers 378 Following Postdoc in @ErikaHolzbaur Lab || PhD from Johns Hopkins-NIH @ArielJLevine Lab
Morris ALS Principles @ALSprinciples
325 Followers 19 Following
CVV, PhD @cvandevelde75
461 Followers 901 Following Professor, ALS Researcher, #womeninSTEM, boy mom, and gin drinker. Working for the cause, not the applause. ECM.
Gregory Erb, MD @GregErb5
313 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
Augie's Quest @augiesquest
3K Followers 1K Following Join the Quest. It's time to cure ALS. All funds support ALS research and drug development taking place at ALS TDI.
Seth Rotberg @Srotberg15
2K Followers 1K Following I help infuse the patient voice throughout drug development | #HuntingtonsDisease advocate | @Tedx Speaker | All views are my own
Martin Johnston @MartinJ_MND
2K Followers 568 Following Diagnosed with Motor Neurone Disease in August 2018. Trying to raise awareness of the condition in the hope a cure can be found. Also @MJ_No9 🏴
Jinsy Andrews, MD @JinsyMd
456 Followers 24 Following Neurologist, neuromuscular specialist. Opinions shared here are my own personal views.
Scott Smith @ScottFightsALS
9K Followers 497 Following Father, husband, gym owner, ALS warrior and storyteller. Founder of BodySmith and Flex On ALS. 💪
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.
GayValimont #GetGaetz.. @GValimont
10K Followers 4K Following Widow to Brian, who had #ALS, mom to 9yo son Eli who died of #DIPG brain cancer, six months apart. Now, I am running for Congress. @gayforcongress
Jonathan Schertzer (S.. @SchertzerLab
1K Followers 819 Following Immunometabolism research: Diet, microbes, drugs and hormones
rob survick @Robdback
268 Followers 438 Following
Rep. Anna G. Eshoo @RepAnnaEshoo
52K Followers 1K Following Representing California's 16th Congressional District – the heart of Silicon Valley. 📧Sign up for weekly legislative updates at my website
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!
Jamie Timmons @metapredict
2K Followers 760 Following OMICS-Data-DrugDiscovery-Metabolism-Aging. Odd humour reflects my fusion of Scots-Irish & Jewish 🧬 😲
#F*CKALS @broddyyy3
469 Followers 688 Following Spread positivity and the most important message, LIVE YOUR LIFE!SFASU ALUM
Ruben van Eijk @rpavaneijk
482 Followers 117 Following MND researcher interested in clinical trial methodology | MD | PhD | MSc | Parttime cyclist
Coya Therapeutics @CoyaTx
2K Followers 94 Following Coya (Nasdaq: $COYA) is unleashing the power of Tregs to tackle neurodegenerative and autoimmune diseases.
ALS CURE Project @alscureproject
690 Followers 511 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)
Michele Stellato @shellymckenna
1K Followers 540 Following Communicator. A fan of kindness and living in the moment. ALS advocate.
Brian Taylor @coachbrian6262
271 Followers 374 Following Hi I’m Brian...dad, husband, nice guy, als warrior
Jeremy J. Van Tress, .. @jeremy_vantress
381 Followers 329 Following Husband. Father. US Army Veteran with ALS. US Paralympic hand cycle hopeful. Social Worker. #Paris2024
Sean Roach @ItsSeanRoach
11K Followers 1K Following Father, Widower, Entrepreneur, Speaker & often called The 'THINK ENGINE': Helping businesses and people grow their Impact, Influence and Income.
Deane Gorsline @DeaneGorsline
363 Followers 964 Following Former 1CER Combat Diver and soldier @1CMBG_1GBMC - Husband to @Dani_petes - In the Fight Against ALS advocating for my brethren @ALSAction @ALSBurpee
David Taylor @VPResearch_ALS
1K Followers 1K Following ALS Canada VP, Research. Passionate ALS research nerd since 2001. Science brain, advocate heart. Opinions are my own. he/him
QurAlis @QurAlisCo
494 Followers 233 Following QurAlis Corporation is a private clinical-stage #biotech driving #Precision #Medicine breakthroughs for #ALS, #FTD, and other #neurodegenerative diseases.@J_C_MD_PhD @BetterResearch If only this common sense approach could be transferred to oncology, where the field recklessly treats simple tumor formation rather than being rational and waiting for Cachexia.
@Jeanc9orf72 Lots of neurologists have the same attitude towards sporadic ALS
@aVoice4ALS @ProjectALSorg @ionispharma @CRiverLabs Just a couple years ago some “advocates” on X were complaining that this treatment shouldn’t be funded because it wouldn’t help enough people with ALS and it was very far from the clinic. Glad to see the day, not too long after, where we are seeing this is just not true.❤️
@BrielmaierL @alsadvocacy @Jeanc9orf72 @CathyStandish Not at all. it’s just not realistic in ultra rare, you will never get anything developed at current cost of capital. The FDA is encouraging scaled SAD/MAD designs for example that meet scale and measurement requirements without the time burden.
@BrielmaierL @alsadvocacy @Jeanc9orf72 @CathyStandish [Fixed]: if you believe ALS heterogeneity and requirements of subtyping, you get to unfundable drugs quickly (FUS isn’t at biogen for a reason). All those programs dropped off the table for large pharma with high interest rates, and reason to pursue went away with the IRA.
@BrielmaierL @alsadvocacy @Jeanc9orf72 @CathyStandish Anyways, Twitter’s a poor forum for these debates, appreciate all you folks do. Would love more focus on design and IND-enablement.
@ajlees @MichaelOkun Mine were first symptoms. I’m stunned at how little even als Neuros know about their own damn disease. It’s outrageous and Frankly disgraceful
@MichaelOkun ALS always has a first symptom, and all too often, it is dismissed until a bunch of other symptoms become all too apparent.
Long 🧵-sorry! Went through two years of ALS and grieved daily, watched my person lose everything-rapidly. It felt like a sinking boat- I would plug one hole and another would appear. We were trapped in our house with no escape: ALS+pandemic = very bad. 1/11
@nadia_sethi I can't even begin to express how much I admire you and respect the work that you are doing. You are a catalyst for good in this awful disease... Please don't get discouraged. For every expression of anger and frustration there is also one of hope. Thank you for being you.
Most of the world knew the ALS version of Chris, but this video right here, this was Chris. In my dreams now, this is who he is again, strong and healthy and laughing — and desperately trying to dump people off the tube. 💜
@VPResearch_ALS @FinishALS @emplowman Also voice used for pridopidine (Healey regimen D) b/c of potential for bulbar benefit. Have spent some time reviewing details of many ALS trials in last few months- these all are measures in many trials. We just don’t hear about the details on social for most trials.
@FinishALS Speech is interesting. A lot of people working on & validating very sensitive ways to measure longitudinally. I think it was in small trials to measure Nuedexta effects on bulbar dysfunction. Some really strong SLP ALS experts who would know current state like @emplowman .
@FinishALS My understanding is that SVC is easier for people with advancing disease so worked better as a trial outcome than FVC, put to the forefront more by Cytokinetics trials after it was signficant in tirasemtiv P2. It is still a common secondary outcome.
@FinishALS Muscle strength has some pretty good prominence in the tofersen VALOR OLE readouts. It’s definitely still in the mix & HHD is in a good number of trials I think.
Tomorrow will mark 8 yr hearing "you have ALS," &10 years symptom onset. Still here! It’s not easy, but having a loving, caring & unflinching family/friends makes it possible. Thank you all for your love and support ❤️ 💕.
NEWS: Barry Melrose has Parkinson's disease and is stepping away from our ESPN family to spend more time with his. I've worked with Barry at ESPN for over a quarter century. Cold beers and hearty laughs in smokey cigar bars. A razor sharp wit, he was always early & looked like a…
I miss the good old days of heliskiing, wakeboarding, snowboarding, mountain biking, diving, travelling…… Pretty much everything preALS
Today the love of my life asked me to be his forever, while wearing a tigers shirt to honor my dad. I’m one lucky lady.
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