ALS Advocacy @alsadvocacy
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. alsadvocacy.com Stanford MedX ePatient Scholar Joined February 2009-
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Honest to Pete, I don’t understand the unconditional hatred some have for DEI programs. I just don’t get it. iamals.org/action/educate…
NFL to allow players to wear protective soft-shell helmet covers during games houstonchronicle.com/sports/article… via @HoustonChron “We’ve got two years of data now showing significant concussion reductions in those players that wear Guardian Caps in the NFL,”
Pfizer scores FDA nod for hemophilia B gene therapy, will charge $3.5M per dose fiercepharma.com/pharma/pfizer-…
Does this mean that they're not charging payers for services? Free? ??? @alsnewstoday The clinic at East Tennessee State University Health is the only one in the state to offer free multidisciplinary care to ALS patients. alsnewstoday.com/news/etsu-als-…
Scientists report that new gene therapy slows down amyotrophic lateral sclerosis disease progression medicalxpress.com/news/2024-04-s… via @medical_xpress
Heard on the Street: For Biogen, a company in its fifth year of shrinking sales, glimmers of hope were good enough to send its stock surging wsj.com/finance/stocks… via @WSJ
Great night at @fenwaypark celebrating @BCBirdBall pitcher @johnny_west13 and surprising Jim Duhamel with a @PermobilCares wheelchair! ⚾️🦅 #ALSawareness #livelikelou #lougehrigsdisease #bcbirdball #strikeoutALS
May 1, 2024 (4PM PT | 7PM ET) Register: everythingals.org/events #EndALS #EverythingALS #ALS
Emerging role for sphingolipids in the genetics of #ALS | Neurodevelopmental & genetics combine into a multistep process to critically underlie the variability in phenotypes. Unravelling preclinical phases represents the next complex undertaking @magxcite jnnp.bmj.com/content/95/2/1…
Emerging role for sphingolipids in the genetics of #ALS | Neurodevelopmental & genetics combine into a multistep process to critically underlie the variability in phenotypes. Unravelling preclinical phases represents the next complex undertaking @magxcite jnnp.bmj.com/content/95/2/1…
Community engagement isn’t an item to cross off a checklist – it is an active relationship that is necessary to ensuring that health and health care policies are tailored to those impacted. Read more in this #NAMPerspectives commentary. #BeLikeLight doi.org/10.31478/20220…
Hot on the trail! Wednesday the Project ALS Therapeutics Core met with Cornell’s Giovanni Manfredi and Hibiki Kawamata Fujita and George Mentis (Columbia) to devise next steps in its intensive study of a new gene that may drive ALS. #ENDALS
Please spread the word. This is important and quality content.
Please spread the word. This is important and quality content.
The Without Borders site is looking for blogs on the topic of #neurology and global health. The mission of Without Borders is to provide important, engaging, and timely content on issues in #GlobalNeurology. Learn more: bit.ly/4aLXtSF @DeannaSaylor1
Our #AccessTheVote campaign is aimed not only at ensuring voting is #accessible for our community, but also ensuring our community is educated and informed. Won’t you join us? mda.org/vote.
Our #AccessTheVote campaign is aimed not only at ensuring voting is #accessible for our community, but also ensuring our community is educated and informed. Won’t you join us? mda.org/vote.
On the Horizon: A Robot to Assist ALS Patients news.stonybrook.edu/newsroom/press…
You can edit these letters if you don’t agree w something. I personally think it’s nuts to ask for $15 mil for registry. That’s a 50pct increase for a project w poor deliverables. We can spend that $ in better ways for those w ALS.
You can edit these letters if you don’t agree w something. I personally think it’s nuts to ask for $15 mil for registry. That’s a 50pct increase for a project w poor deliverables. We can spend that $ in better ways for those w ALS.
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
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.
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.
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 517 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.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
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.
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
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)
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!
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 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.
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
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.
Evan @syntaxsnac
3 Followers 251 Following
ナウル共和国政.. @nauru_japan
484K Followers 245K Following ナウル共和国政府観光局日本事務所の公式🇳🇷総人口 約一万人の南太平洋の国🇳🇷フォロバ100%（時間かかります）🇳🇷#ナウルが名売る #ナウラー #ナウルなう #ありが島ナウル島 #気にナウル 🇳🇷 https://t.co/kCai1b1kvy
B Massetti @rtd681
40 Followers 67 Following
TiffaneyTippery @TiffaneyTi84522
4 Followers 687 Following
Mekselina @mekselinacay
10 Followers 161 Following
Dr. Marcos J. Ramos-B.. @dr_mjramos
1K Followers 729 Following Assistant Professor @PonceHealthSU👨🏾🔬 | President at @cetmpr | Boricua 🇵🇷 | I study Molecular Pathogenesis | Musician 🎶 | My opinions are my own
marie _ @lycanthropeuk
12 Followers 95 Following
8bacruhc2r0p34w @kljmrhnaf5
4 Followers 454 Following Our company first transfer USDT to you TRC20, you return 90% to our BEP20, you get 10%, you get 2K per day Telegram group for details: https://t.co/Ggyil8pTQ1
Andy Greenspon @andyman344
334 Followers 2K Following Researcher in quantum physics. Interests in science, policy, philosophy, and anything that can amuse to no end.
Martin Shkreli (e/acc.. @MartinShkreli
167K Followers 3K Following https://t.co/lzin5ByH0t [email protected] https://t.co/oMIiyJcIzk https://t.co/DuU6MMqcgQ
Ian Seepersaud @iamseep
362 Followers 1K Following
齋藤英雄 @hideitom16
1 Followers 28 Following
Canan Bektaş @oroperi2
45 Followers 1K Following
Elizabeth Snouffer @ElizabethType1
1K Followers 2K Following She/her. Writer, editor, former resident of London, Hong Kong, Rome, Singapore, Shanghai thriving with 46 years T1D. Obsessed with health, access and rights.
Rick Reyer @RickDReyer
888 Followers 2K Following Retired! Leadership, project management, comms, freelance drummer, fishes, hunts, cooks, reviews music, and reads the Bible.
Iveta Mareckova @Imar83505
0 Followers 19 Following
Brad Uptgraft @braduptgraft
168 Followers 50 Following
The Mac Parkman Found.. @brains_matters
624 Followers 2K Following The Mac Parkman Foundation's purpose is to raise awareness and drive research on the links between Youth Contact Sports, Brain Trauma and Mental Illness.
Ricksy @Ricksy_G
421 Followers 907 Following Building | NFT Collector | Art | Bloo Oasis | BTC #Runestoner
ALS Northwest @ALSNorthwest
526 Followers 350 Following ALS Northwest provides support and resources for people living with ALS, their families, and caregivers.
falcon @bos46476740
4 Followers 350 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
Sea turtle lovers clu.. @seaturtle_uk
349 Followers 4K Following 1👉 Welcome @seaturtle_uk 2 🐢 We share daily #Seaturtle Contents 3 🐾 Follow us if you really love Sea turtle
Daily Runner @AtassiNazem
284 Followers 96 Following
Jan @Phil45814Janice
4 Followers 92 Following
Bruce M @BruceM496
1 Followers 44 Following
Hal Mackins @halmackins
286 Followers 1K Following Trail runner, dad, life sciences junkie, music nerd, and @torchcom senior partner. Hi, LLama!
#Churley 🌊🌊🌊 @churley7111
10K Followers 11K Following #WokeAsFuck #BeKind #RESIST #BLM #WomensRightsareHumanRights💙 #ClimateChangeisReal🦋#BidenHarris 🌊🌊
Offthegrid🇺🇸✝.. @offthegrid01
279 Followers 1K Following
zoketepija @zokeart
37 Followers 213 Following I'm a fool who draws random things 🇨🇱/🇦🇷 I'm a normal man without I'm a normal man with no additives 🥴👉 I love cats alv❤️❤️❤️ Who the hell is Carlos?
Shahla Croxford @ShahlaBaghesta1
24 Followers 86 Following Retired physiotherapist . Humanity is most important . Campaigner to End Motor Neurone Disease since 2022 . NHS is a human right .
Richard Evans @RichardJaEvans
2K Followers 2K Following Director of Public Affairs at @ukfuturehealth. @PointofCareFdn trustee. Have written books about journalists Basil Clarke and Philip Gibbs.
Mindy Uhrlaub @MindyUhrlaub
159 Followers 169 Following https://t.co/4uNkZvnKfp. Author, Unnatural Resources. Familial ALS Warrior.
Fazlı @fazlibesli
12 Followers 228 Following
Margie Sherlock @MargieSherlock
2K Followers 4K Following researcher, advocate, optimist; #precisionmedicine, #globalhealth, #SciComm, #digitalhealth, #SDoH, #stopsuicide, #stopstigma
Charles Lourenco @CharlesGenetics
190 Followers 755 Following Clinical Geneticist, PhD/MD Professor of Clinical Genetics and Hereditary Metabolic Disorders Faculty of Medicine of São José do Rio Preto (FAMERP) - Brazil
Abigail Dos Santos @abglds
44 Followers 148 Following
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.
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.
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 517 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.
Jamie Smith @JamieLW8
4K Followers 567 Following Mother I Widow I Pediatric Respiratory Therapist Fighting for reform in health care and research for ALS.
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.
Steve Gleason - "Live.. @SteveGleason
199K Followers 247 Following New Instagram - @stevegleasonofficial Dad. Husband. Inspiring all people to live purposefully, despite tragedy. I tweet with my eyes. Embracing 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
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 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)
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 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.
Mandi @RunningMama0522
2K Followers 1K Following
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.
MND Association @mndassoc
48K Followers 13K Following Our vision is a 🌎 free from 𝐦𝐨𝐭𝐨𝐫 𝐧𝐞𝐮𝐫𝐨𝐧𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 #MND
Lauren Holder @laurencurehd
467 Followers 470 Following HD advocate, #rarediseases advocate, Producer of Help4HD Live, caregiver, mom, and much more!
Margaret Fosmoe @MFosmoe
3K Followers 2K Following Associate editor @ndmagazine. Reporting news at the University of Notre Dame. Book recommendations, local history alerts & more. [email protected]
Ximena Benavides @XSBenavides
2K Followers 5K Following Health Law, Biotech & Innovation |Postdoc & Lecturer in Ethics, Polit. & Econ @ISPSYale |Fellow @yaleisp |@YaleLawSch JSD,LLM |Teach Healthcare Biz Ethics @Yale
Elizabeth Snouffer @ElizabethType1
1K Followers 2K Following She/her. Writer, editor, former resident of London, Hong Kong, Rome, Singapore, Shanghai thriving with 46 years T1D. Obsessed with health, access and rights.
Haystack Project @HaystackProject
208 Followers 269 Following We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Indiana Fever @IndianaFever
108K Followers 1K Following Official home of the Indiana Fever | 2012 WNBA Champions 🏆 | #IndianaFever
Chloe Peterson @chloepeterson67
2K Followers 658 Following writing about the Indiana Fever, iuwbb, and other things for @indystarsports | uiowa alum | past: @thedailyiowan, @azcsports | she/her
Lilly Medical US @LillyMedical
8K Followers 73 Following Lilly's official US support channel for Medical News, Information, and Education.
Janice Robertson @JanuceRobertson
272 Followers 222 Following
John Maraganore 🇺�.. @JMaraganore
14K Followers 412 Following Founding CEO of @Alnylam. Pioneered RNAi therapeutics as a whole new class of medicines for patients. Now bioentrepreneur-at-large. Opinions are my own.
Dave A. Chokshi, MD @davechokshi
8K Followers 592 Following primary care doctor; public health advocate. (tweets personal)
Nothing Left Unsaid @nlutimgreen
18 Followers 11 Following Tim Green's "Nothing Left Unsaid" is a weekly podcast hosted by Tim and Troy Green. https://t.co/CgOi7Z7tUk
PCMA @pcmanet
4K Followers 2K Following Pharmaceutical Care Management Association: representing America's pharmacy benefit companies. Dedicated to reducing drug costs for 275 million Americans
No Patient Left Behin.. @NPLB_org
1K Followers 333 Following We're a non-profit dedicated to making medications affordable for everyone in America. Follow us here for advice on how to deal with health insurance companies.
Mila's Miracle @stopbatten
885 Followers 340 Following Mila fought hard against Batten disease, a rare fatal condition with no cure. Her story is now giving new hope to millions with genetic disease.
Laurie Heifetz, write.. @thetravelprose
2K Followers 4K Following Fodor’s | The Knockturnal | USA Today | NY Post | Ent • Trav • Food • Tech • NFT• #Sustainability. https://t.co/Ux8H9776oT
GerryDick @GerryDick
19K Followers 3K Following Emmy Award-winning journalist, entrepreneur, husband, father, native Hoosier, sports fanatic.
Andrew Joseph @DrewQJoseph
6K Followers 898 Following Reporter at @statnews, covering health and medicine out of Europe. Past: SA Express-News, SF Chronicle. [email protected]
Annalisa Merelli @missanabeem
17K Followers 4K Following Reporter @statnews. Once/always: @qz @globalvoices, @narratively, @motherlandmag, @theballoon, @tumbuktumag, @fabrica ❤️: https://t.co/cMPorf3tEB she/her
Heather Marriott @HevMarriott
266 Followers 370 Following Postdoc in Translational Bioinformatics of ALS/MND @kingsmnd 🧠 | @mndassoc and @MNDScotland Pre-Fellow | All views are my own. she/they 🌈
Grace Dow @Gracedowwrites
394 Followers 400 Following I am a writer who has cerebral palsy. Please visit my blog at https://t.co/CsH6apJJ0j
The LEITH Lab @LEITHLab
62 Followers 28 Following LEITH Lab strives for compassionate care and humanizing research in rare diseases among historically underrepresented communities. Directed by @AudreTaughtMe2
sycamoretrust @sycamoretrust
246 Followers 228 Following Alumni & Friends protecting Notre Dame's Catholic identity | #GoCatholicND
FDLI @foodanddruglaw
2K Followers 1K Following A membership organization offering education, training, publications, and professional networking opportunities in the food and drug law field.
Claire Bettag @clairebettag
58 Followers 87 Following President of @tpusa SMC | President of @crepssmc Saint Mary’s College 25'
Francis X. Rocca @FrancisXRocca
14K Followers 2K Following @WSJ alum: Vatican and global religion. Director of “Voices of Vatican Il” https://t.co/BDfIovv52t Email: [email protected] & DMs open
Macy Gunnell @MacyGunnell
110 Followers 116 Following Vice President SMC @tpusa | Vice President @crepssmc | Co-host of Cancel 38 | Saint Mary's College, University of Notre Dame
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
Jim Foot @JimfightsALS
446 Followers 822 Following Retired Engineer. Worked for the TSB of Canada. Now living with ALS but have a wonderful caregiver and 3 grandsons who take our minds off other problems.
MitoSense @MitoSenseInc
819 Followers 759 Following "Harnessing the Power of Mitochondria to Fight Disease" ™️ such as ALS, Alzheimer’s, and Parkinson’s.
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!
Holy Cross College @HolyCrossND
3K Followers 731 Following Holy Cross College is a residential, coed, four-year institution in Notre Dame, IN, offering a distinctly Catholic liberal arts curriculum.
Niki Kelly @nkellyIN
16K Followers 780 Following Covering state government and politics in Indiana since 1999. Editor-in-Chief for Indiana Capital Chronicle. https://t.co/RBTOMlAERB
Patients Know Best @patientsco
4K Followers 4K Following Transforming healthcare by giving patients access and control of their personal health records. Everyone benefits when Patients Know Best. #ManageYourHealth 💙
Mohammad Al-Ubaydli @idiopathic
2K Followers 197 Following Physician, programmer, patient, founder of Patients Know Best: https://t.co/0VAmI3ZyQo
Mary Beth Schneider @marybschneider
20K Followers 4K Following ↙️ After years covering politics & govt for Indy Star & then writing a column for StatehouseFile I’m retired! Not a Twitter Blue subscriber.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
The Air Current @theaircurrent
23K Followers 271 Following Data-driven reporting & analysis on the business, technology and strategy of flying. There’s always an aviation angle.
DocTruactive❄☃️.. @Truactive
11K Followers 11K Following I am a disabled retired physician living with ALS. Love westies and detest Trump. #AdoptDontShop #Resist #BLM #IStandWithUkraine #EndALS
Join Team Mia! @join_team_mia
81 Followers 50 Following We are the family and friends of Mia Costanza Wiggers, taken by ALS in March 2023, supporting other pALS and their families
Patient-Led Research .. @patientled
27K Followers 613 Following Patient-led research and advocacy for #LongCovid and infection-associated chronic conditions!
. Josh__/_Swerve__End.. @SwerveALS
270 Followers 330 Following . VR & Screen Experiences. Therapeutic Dawn. Info: https://t.co/HsedAR2lPU / Josh * Website is for laptops, not phones - Yes @IamALSorg @ALSAction
Jayne Halhead 🌹 @Jaynes__World
6K Followers 4K Following In memory of my Dad, a burly #Lancashire dairy farmer, I'm raising awareness of motor neuron disease #MND/#ALS #MND #MoreNeedsDoing! Championing #Lancashire
David Setters @dsetters
2K Followers 2K Following Got slowly progressing MND. Luckier than most so have to make extra days count. I intend to! Making memories with family. Campaign, raise awareness & funds.
Richard Cave 🇺🇦 @speedoftrust27
2K Followers 940 Following Speech and Language Therapist with MND Association & Adecco for Google. Part time PhD @ UCL. International Alliance of ALS Associations professional 2022 award.
Elissa Welle, PhD @ElissaWelle
817 Followers 1K Following neuroscience 🧠 reporter for @_TheTransmitter | bylines in @reuters @nature @chronicle @statnews @freep | ex-neural engineer | tips? [email protected]
Wes Stansberry @WesStans_
299 Followers 518 Following PhD Candidate @IUMedSchool Graduating Spring 2024 • Medical Neuroscience @NeurosciStark • Pierchala Lab • Neurodegeneration & ALS 🧠 🧬
A night of one of my favorite musicals with (@DJDeerAttack) punctuated by an intermission of people yelling “PACERS WON.”
24 years ago, retired South Bend Police Lieutenant Gene Eyster responded to a call about an abandoned baby, but never found out what happened to the boy – until recently. @SteveHartmanCBS is On the Road.
Community engagement isn’t an item to cross off a checklist – it is an active relationship that is necessary to ensuring that health and health care policies are tailored to those impacted. Read more in this #NAMPerspectives commentary. #BeLikeLight doi.org/10.31478/20220…
Registered and looking forward to it!
Registration is now OPEN for the 2024 "Expanded Access 101" FREE webinar on 5/15. Excited to be partnering with @ISCTglobal's EA Working Group on this year's event, which will focus on the role of #clinicians in #ExpandedAccess. Register now! nyulangone.zoom.us/webinar/regist…
Two years at @politico today. Took me a long time to get here living in Flyover Country, and I’m so grateful to get to do this work.
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
@limpbroozkit @patricktabeauty @Weleda @drunkelephantjp @nudestix Dad Powers are ever-awesome things.
Our #AccessTheVote campaign is aimed not only at ensuring voting is #accessible for our community, but also ensuring our community is educated and informed. Won’t you join us? mda.org/vote.
Join #MDA as we launch our #AccessTheVote campaign, designed to help educate and empower the #neuromuscular disease community and the broader #disability community to participate in the electoral process this November. Learn more: mda.org/press-releases… @MDA_Advocacy
@draevans I am concerned about the term 'burden' because that is a moveable feast. I think that feeling a burden does not make you a burden and it is important to keep your focus on living life while you can. So many people with a terminal diagnosis lose hope - that is sad & kills.
Currently reading: Wide Awake and Dreaming, by @RemRunner
John Crowley '92 J.D. has dedicated his life to finding a cure for the rare disease that afflicts his two children. His daughter, Megan '19, graduated from Notre Dame 20 years after she was told she had six months to live. #WeAreND // go.nd.edu/980349
Ohh, this has me teary! Thank you for reading my book, @SusannahFox. This means the world to me, as I look up to you as a role model and mentor. Thank you for all you do to support and elevate patient voices!
I saved the final chapter of WIDE AWAKE AND DREAMING for this morning, Boston Marathon Day, and was in tears reading how @RemRunner overcame all obstacles, including narcolepsy, to finish.
@alsadvocacy They paid my COBRA, for a while. After I was Terminated for being Disabled. Regardless of where the money came, might taken trumps money too, I would have never gotten a drug with a 3k/mo copay either.
I had the most efficient doctor’s appt I’ve ever had today. It took me 5 years, a stage IV cancer diagnosis and a crazy amount of trial and error trying to understand the medical system to get here. Genuine question, why isn’t this taught in school? 10% of the efficiency of…
An incredible honor to sit down with Pope Francis today. Watch part of our wide-ranging interview here @CBSEveningNews
Pope Francis addressed worldwide concerns of war, peace, famine and climate change — expressing heartfelt prayers for children suffering from the conflicts in the Middle East and Ukraine. During a rare one-on-one interview with @NorahODonnell, his Holiness urged all nations…
I’m looking forward to joining these incredible people tonight for A Toast to Civility. Thanks to SHRM for inviting me so that we can all be a catalyst of civility — one conversation at a time.
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