Ken Kowalski ❎ @ALSSurvivorKen
#ALSsurvivor Since 2007 & Super-Cool (kidding) 😎 ALS Activist/Influencer/Futurist/Non-Victim "Never give up!" https://t.co/zWZjLU5Kmi 🏄♂️🚵♂️🏂🤙 gofundme.com/ALS-Survivor Arizona, U.S.A. Joined September 2014-
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What's the 4/11? : 4/11/2024 is the 17th anniversary of my diagnosis of ALS / Lou Gehrig's...in most aspects it is a good day , like - "WOW, I'm still here after 17yrs!" gofundme.com/ALS-Survivor #ALSsurvivor #hope4kowALSki
Cool 😎 sunset 🌇tonight ...I give it 🌵🌵🌵🌵❗ #ALSsurvivor #hope4kowalski
Please nominate your favorite #ALSsurvivor (hint,hint) for the 2024 IamALS.org Community Awards! It's totally free and you can opt out of the email communications list if you want. 2024 Community Awards Nomination Form iamals.org/action/2024-co…
QALYs ,an ugly acronym created by actuaries somewhere may have met its match buried in this bill... 🏛 #ALSsurvivor #hope4kowALSki #ALS #MND #ALSadvocacy
QALYs ,an ugly acronym created by actuaries somewhere may have met its match buried in this bill... 🏛 #ALSsurvivor #hope4kowALSki #ALS #MND #ALSadvocacy
A novel elderly care robot could soon provide personal assistance, enhancing seniors' quality of life techxplore.com/news/2024-02-e… via @TechXplore_com Psst...Another thing to put on my Christmas 🎄 list 🦾🤖#ALSsurvivor #hope4kowALSki
I could use your help reaching my fundraising goal. Every single share and donation makes a difference. #ALSsurvivor #ALSBucketList gofund.me/c3a1d582
Today marks the 12th. anniversary of my homecoming from my 5 month "Hospital Tour de Phoenix ". From July to December 2011- I was hospitalized for the 1st time in my life and told that I'd never be home again (EVER gofund.me/999db867
I'm doin' the Dead every day this November. Take the 30 Days Of Dead Challenge dead.net/30daysofdead?c… via @GratefulDead
Happy Thanksgiving! Despite the daily challenges of ALS/Lou Gehrig’s Disease, I’m grateful for so much. My wife Carol’s loving care has put me in the top 2% of #ALSsurvivors in the US. November is Caregiver’s Month, and I’m thankful for her support! gofund.me/0fa4cd4f
Such a bummer! We had to take down a Saguaro cactus 🌵 due to "the Rot". At 25 ft tall, it was a disaster waiting to happen. The good news is we've found a replacement at a nursery that sums up my feelings about ALS/Lou Gehrig's Disease !😁 #ALSsurvivor gofundme.com/ALS-Survivor
Big Thanks to Michael Doherty for at least pretending to be entertained by the not -so -grumpy -old -guy observations! Yet another South Bend LaSalle High School alumni to donate...Now don't get me started on that new-fangled Pickle 🥒 Ball! 🏓 😎 gofund.me/f6c938c3
Ken's ALS FAQs: Guess who's living at home after 11yr w/ALS on a ventilator? This guy! I owe it to my awesome wife Carol, who takes care of me like a boss. She's the best thing that ever happened to me, besides getting out of "hospital hell". #ALSsurvivor gofundme.com/ALS-Survivor
Despite being on "IR" because of an unspecified illness for the official MLB Lou Gehrig's Day event [low-grade fever /chills, achy everything, sinusitis,etc. ]. I'm remaining optimistic about getting to another game this season, hopefully near the 4th gofund.me/999db867
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
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.
Shah Minokadeh, M.D. @MinoShah
4K Followers 719 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal 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.
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
End ALS Now @EndALSNow
955 Followers 928 Following ▪Bri ▪I mainly amplify #ALS tweets ▪ALS=wretched, cruel, 100% fatal ▪RT=awareness, not agreement ▪🚫DMs🚫 ▪#EndALS ▪#SunflowerForSandy 🌻 ▪#RoseForJamie 🌹
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.
alsHATER @HaterAls
1K Followers 965 Following als hater MM lover Impossible is an option One woman army
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)
Andrea Pauls Backman .. @AndreaBackman05
2K Followers 1K Following ALS strategist, former CEO @lesturnerals, board member various ALS orgs. lost mom to ALS in 2010. passionate about people w ALS/MND & fighting for cures.
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.
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
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
BrainStorm @BrainstormCell
5K Followers 777 Following BrainStorm Cell Therapeutics, Inc. (NASDAQ: BCLI) is a clinical-stage biotechnology company developing autologous cell therapies for neurodegenerative diseases.
Mike Harrington @Shankapotomas
3K Followers 926 Following Just a dude with ALS. Not dead yet, though.
Sherry Quisenberry @sherryquis
2K Followers 1K Following A Kentuckian living in GA. Living with PLS/ALS and pissed that no access to real treatment exists. Love books, good jokes, my family and the changing seasons.
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 906 Following Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for change for ALS.
Madie Forge @madie_fo
33 Followers 5K Following
Betty’s Brigade Fou.. @No_More_ALS
353 Followers 530 Following We Are… the Betty’s Brigade Foundation ________ We Are… Fighting ALS Together _________________ - to raise ALS awareness & funding
Steighley @steighley30848
0 Followers 305 Following
Louann Drevs @loua_drev
70 Followers 5K Following
joysmith lords @joysmithlords
151 Followers 1K Following
Lilly-rose Delagrange @Delagrange82955
81 Followers 5K Following
Ajenifuja Toluwalase @AjenifujaT27770
49 Followers 381 Following Engineeria Ajenifuja Passionate engineer with a knack for solving complex problems in designing innovative solutions and dedicated to achieving efficiency. Read
Emily_Tracy001 @Emily_tracy001
76 Followers 535 Following Welcome to my profile I'm Emily, a crowdfunding campaign marketing expert specialize in crowdfunding campaign Setup and promotion Feel free to INBOX ME NOW
Ramona Applen @ram_appl
76 Followers 5K Following
Madam Mitochondria @Madam_Mito
5K Followers 6K Following Obsessed with Mitochondria and Optogenetics/ Longevity Chaser/ Aging is inflammation/ VR is the future/ Philosophy, Art, Music and Love make existence bearable.
Colby Shiraishi @col_shirais
56 Followers 5K Following
Elsie Taborn @ElsTabor
67 Followers 5K Following
Marcell Hurme @HurmeMarce
39 Followers 5K Following
Sadie Arnaudet @SadArnau
20 Followers 2K Following
jaime benton @isreal553480
28 Followers 100 Following After a year of various treatments, including chemotherapy, radiotherapy, so all thanks to JOHN_90 for working great on my campaign to reach my goal
Barry Hayes @BarryHayes10756
13 Followers 256 Following This is a fundraiser to support the repatriation of Michael Holt from Cape Verde, to his family in the UK.
Sophia Brown @mathew_ade53447
285 Followers 4K Following I'm committed to delivering compassionate care and improving lives through innovation. My passion for medicine drives me to make a positive impact
Chuck McDowell @CharlesMcDsr628
848 Followers 4K Following Plumber /played in a rock band 80's and 90's love to have fun and do some crazy stuff
Thene @Thene1433450
13 Followers 1K Following
Shera Lalk @shera40480
20 Followers 5K Following
Doretha Liston @ListoDoret
62 Followers 5K Following
Shalanda Gallob @gall_shalan
48 Followers 5K Following
Penny Kanae @PKanae53014
31 Followers 4K Following
penny hughes milner @pchmilner
57 Followers 153 Following
Francisco jose Ribago.. @RibagordaAvila
35 Followers 305 Following En proceso…. preparándome mentalmente!
Khaleed Agency @AgencyKhal27408
77 Followers 545 Following obtaining financing The secret to a successful crowdfunding campaign is to engage your audience and spread the word about your story, and we make it simple.
Katiecarnel @Katie_carnel
134 Followers 683 Following Wyatt was hit by a drunk driver and has many medical expenses coming his way. Pls help by donating to his campaign https://t.co/psX8hMcTs6
Digital marketers @TechMarket_MA
350 Followers 3K Following As a passionate supporter of innovation, Your thrives on interacting with like-minded people and creating a supportive environment for each campaign.
Yu Digital Agency @okandeji_yusuf
565 Followers 5K Following Experts at Digital marketer , crowdfunding promoter , freelancing
Oyinloye Daniel @oyinloye_d19407
38 Followers 518 Following My goal is to help you achieve crowdfunding success, making your vision a reality with a dedicated partner by your side. Let's work together for a success.
Lilianna Olson @LiliannaOl49962
112 Followers 3K Following
Jordyn Huynh @huynh_jord87181
101 Followers 3K Following
Maria Cernas @CernasMari75760
95 Followers 3K Following
Legend F @LegendF191142
288 Followers 2K Following Crowdfunding Marketer | Transforming Dreams into Reality | Fundraising Expert | Passionate about Innovation | Let's make your project a success! 🚀
Bill P Fights @WilliamP_Sr
134 Followers 338 Following Love my family and God bless the USA 🦅. Whiskey on the rocks. In the fight of my life. I hate ALS!!!!
Rachel Doboga @RachelDoboga
773 Followers 132 Following Writer, teacher. Dx w/ALS age 28. I advocate and raise awareness by blogging to show the reality of #ALS with humanity, vulnerability, and unflinching honesty.
Sarah P. Hancock, MS,.. @PsychRecovery
4K Followers 4K Following Living w/ #ECT's #TBI & #Electricalinjury means using #Rehab training to #advocate Rehab, #PatientSafety & #InformedConsent #BYU #AAC #LDS #MND #CAA #CSS
Benjamin @Benjamin1518836
30 Followers 296 Following
Mass fund @fund_mass
31 Followers 431 Following
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.
Twitchy and scared @DrDyingToLive
97 Followers 385 Following 32y F w/ 10 months of numbness, tingling, nerve pain, muscle twitching, weight loss, swollen glands, night sweats, petechiae. Terrified of dx.
Eileen Kelley @Eileen123Kelley
68 Followers 964 Following
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
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 798 Following I AM ALS is a patient-led movement revolutionizing how to end disease with our sights set squarely on 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.
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.
Shah Minokadeh, M.D. @MinoShah
4K Followers 719 Following Anesthesiologist -Johns Hopkins Hospital Pain Management -UC San Diego Now battling ALS & FDA regulatory rigidity for 100% fatal 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.
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
End ALS Now @EndALSNow
955 Followers 928 Following ▪Bri ▪I mainly amplify #ALS tweets ▪ALS=wretched, cruel, 100% fatal ▪RT=awareness, not agreement ▪🚫DMs🚫 ▪#EndALS ▪#SunflowerForSandy 🌻 ▪#RoseForJamie 🌹
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.
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
alsHATER @HaterAls
1K Followers 965 Following als hater MM lover Impossible is an option One woman army
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)
Andrea Pauls Backman .. @AndreaBackman05
2K Followers 1K Following ALS strategist, former CEO @lesturnerals, board member various ALS orgs. lost mom to ALS in 2010. passionate about people w ALS/MND & fighting for cures.
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.
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.
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
Christine Gilmore RN @KickenALSAss
2K Followers 2K Following ALS Bad-Ass. Registered Nurse. MHA . Married. ♿️. DM Scammers will be reported.
Les Turner ALS Founda.. @LesTurnerALS
4K Followers 576 Following The leader in comprehensive #ALS care in Chicagoland
All is Well: Lessons @AllsWell333
619 Followers 4K Following “All is Well: Life Lessons from a Preacher’s Father” by Kevin Martin Jr, a story of love and lessons from his dad. All profits to #ALS. #Deacon #CPA
Bill P Fights @WilliamP_Sr
134 Followers 338 Following Love my family and God bless the USA 🦅. Whiskey on the rocks. In the fight of my life. I hate ALS!!!!
Chuck McDowell @CharlesMcDsr628
848 Followers 4K Following Plumber /played in a rock band 80's and 90's love to have fun and do some crazy stuff
Lorri Cavaliere @LorriCav
1K Followers 4K Following A mom in CT, fighting and advocating every day for the life of my 32-year old daughter, Alexandra, diagnosed with sporadic bulbar-onset ALS in July of 2020.
XR Access @XRAccess
2K Followers 3K Following A community committed to making #XR accessible to people with disabilities. Contact us to join at [email protected] - #a11y #EmergingTech
Mickey Hart @mickeyhart
91K Followers 526 Following I play the drums. Member of the mind bending, spiritual adventures known as the Grateful Dead, Dead & Company & Planet Drum.
Bobby Weir @BobWeir
184K Followers 196 Following Founding member of @GratefulDead, Furthur, RatDog, @DeadAndCompany, and Bobby Weir & Wolf Bros.
Dead & Company @deadandcompany
129K Followers 41 Following Dead Forever: Live At SPHERE Las Vegas Tickets are on sale now.
Grateful Dead @GratefulDead
208K Followers 199 Following The Official Twitter for Grateful Dead! Follow us for the latest news, tour info, pics, & more.
Sarah P. Hancock, MS,.. @PsychRecovery
4K Followers 4K Following Living w/ #ECT's #TBI & #Electricalinjury means using #Rehab training to #advocate Rehab, #PatientSafety & #InformedConsent #BYU #AAC #LDS #MND #CAA #CSS
Rachel Doboga @RachelDoboga
773 Followers 132 Following Writer, teacher. Dx w/ALS age 28. I advocate and raise awareness by blogging to show the reality of #ALS with humanity, vulnerability, and unflinching honesty.
Jeff Haithcock MD �.. @j_allan
1K Followers 5K Following Neuroradiologist, Catholic, Patriot, Spartan, Buckeye, ALS Spouse #EndALS #ALS
Laura Hanson @lamhanson
714 Followers 495 Following Living with ALS since mid 2019. I carry the C9orf72 mutation. Living everyday with focus on the present. Grateful for the wonderful & powerful ALS community 💕
Lauren L @LaurenL18641152
567 Followers 4K Following Proud Wife, Mother, Sister of ALS Warrior and PuppyMama. Stand with Ukraine. 🌻
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
Melinda Hughes @Melinda45399098
36 Followers 22 Following
Dr. Stacy Lewin @FarberStacy
471 Followers 438 Following Wife to a loving husband, Mom to 2 awesome young men, Mom to one adorable doodle fur baby, Anesthesiologist and a lucky daughter, sister, & friend #ALS Warrior
Twitchy and scared @DrDyingToLive
97 Followers 385 Following 32y F w/ 10 months of numbness, tingling, nerve pain, muscle twitching, weight loss, swollen glands, night sweats, petechiae. Terrified of dx.
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.
Kathy Collier @KathyCo74123384
917 Followers 1K Following ALS Advocate. Proud Mom of an Autistic Son. NEVER Forget Richard my ALS ANGEL.
Michael @mpabull
636 Followers 331 Following
Robert Fletcher @RobertF75183389
221 Followers 367 Following Marching on together to beat MND/ALS. Where did all those yesterday's go? Fighting MND and other irritating illnesses.
I’m Dying To Tell Y.. @LorrisPodcast
1K Followers 870 Following Midwest Momma & Wife. ALS Warrior for 20 years. Host of I’m Dying To Tell You Podcast. Living Faith Over Fear. Instagram: imdyingtotellyoupodcast
JC @JC75408607
560 Followers 449 Following Diagnosed with ALS 3/30/22. Living life day by day while I try and process this journey.
Deb Paust @PaustDeb
1K Followers 723 Following Blessed mom, lover of snow, I AM ALS Organizing Associate, old fashion enthusiast and trying to be the change I wish to see in the world. #GoodTrouble
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
Barbara Dunne @Barbaradunne19
871 Followers 697 Following Former bank officer, 3 kids 4 grandkids. Country living is awesome. ALS advocate. The reluctant retiree.
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.
Mitze Klingenberg BSN.. @klink52
506 Followers 605 Following Advocate for people with ALS. BSN, RN. Spent career in psychiatric nursing.
Lisa's Legacy for ALS @LisaLegacy4ALS
2K Followers 906 Following Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honor Lisa’s legacy by advocating for change for ALS.
Mike Harrington @Shankapotomas
3K Followers 926 Following Just a dude with ALS. Not dead yet, though.
D'Andrea Jones @wahhooscwgrl
615 Followers 5K Following I lost an Amazing Husband to the horrific disease ALS! Raise awareness to Lou Gehrig’s disease! #ALSSucks #SoulMates #ALSFindACure
Juliet Pierce @JpierceJuliet
254 Followers 2K Following Associate Director of Medical Services Paralyzed Veterans of America
Hayek Medical @HayekMedical
797 Followers 1K Following Pioneering #Respiratory Solutions, Hayek Medical is the world's home of Biphasic Cuirass Ventilation (BCV), changing the way you think about #Pulmonary Care.
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
VICE Impact @viceimpact
6K Followers 432 Following Advocacy by VICE. There's always something we can do.
VICE @VICE
1.9M Followers 10K Following Original reporting on everything that matters. Sign up for the VICE Newsletter: https://t.co/j8Sv4pBRuVAnyone with a loved one battling ALS knows how incredibly valuable their lives are. When quality-adjusted life years (QALYs) are used to determine the effectiveness of treatments, they undervalue the lives of people living with #ALS. Thanks to @cathymcmorris for moving…
Mark your calendars. 🗓️ The @HouseCommerce Health Subcommittee is marking up the following bills Wednesday, March 8, to strengthen access to critical lifelines, protect individuals with disabilities from discrimination, and combat the illicit fentanyl poisoning crisis:
Check out our latest video to learn more about our PRIME Study! 🧠📱
Wondering what Cognixion ONE is all about? Our CEO @andreas_forslan recently sat down with @neurology_live to share just that, check it out 🔎 ow.ly/gULL50Ow5Tk #CognixionONE #ALS #AssistedReality #AugmentedReality #BCI #A11y #Neurology #Neuroscience #Neurologist
So proud of the hard and impressive work of the coalition of @iamalsorg volunteers and others to push forward PPA for faster access to promising treatments. Proud to testify last week, to read Brian’s words on his behalf because ALS has taken his voice, along with so much else.💔
What was your favorite Halloween candy as a kid, not as an adult thief stealing your child's candy?
We’re excited to announce that recruitment is open for our first-in-human clinical trial! If you have quadriplegia due to cervical spinal cord injury or amyotrophic lateral sclerosis (ALS), you may qualify. Learn more about our trial by visiting our recent blog post.…
We continuously collect and analyze data from implants in the field. Here’s a time-lapse visualization of neuron spike rate across all 1024 channels over a 6 month period. Some days are brighter than others ✨
I have no words to describe how shattered and heartbroken I am today.
The NurOwn Working Group created this amazing social media toolkit for everyone to use to spread the word about the NurOwn AdComm on Sept. 27th. Please feel free to use these social posts as a template for your outreach. We’re in the home stretch! iamals.org/updates/nurown…
I have ALS. I also am disabled. So, my fight is for all of us who are differently-abled. I just wanted to say that as a reminder that we are all in this together.
I just want to say thank you for joining me on this crazy ride. Do not worry, I am not going anywhere, but I was feeling grateful for this community today. It is one of the good things to come out of a difficult situation. Good night moon.
3 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. -Romans 5 #strongwhenweak
"Access" and "approval" are not synonyms. There is a lot that a sponsor can do to provide access to an investigational therapy. A lot. And a sponsor should.
Tonight, I am signing off early so I can spend more time with Sandra and our daughters. I realize how privileged I am to write that sentence. Gratitude for every moment will never be lost on this guy with currently terminal disease. Good night moon.
These days travel is getting harder for me, but this morning we had breakfast with a view thanks to some amazing friends. Happy Sunday all.
When you are so angry that you lash out, I hope you are met with grace. When you are hurt by attacks from others, I hope you are met with grace. When you feel like you cannot go on, I hope you are met with grace. Good night moon.
My #ventilator is dying. I tried the travel ventilator. My numbers were great, but I couldn't handle a lower pressure. I had a #panicattack and felt like I was #dying. Now I'm back on a dying ventilator, hoping insurance will pay for a new one. #ALS #trachlife #prayersneeded
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