Scott Craig. ALS Uncensored podcast. Digital Artist. AI Student. Typing with my eyes. Living Impossible! #ALSUncensored #ALS #EyeGazeArtist #AI #IWriteALS
Planet ALS, Tulsa, OK
Joined September 2009
- Tweets3.9K
- Following996
- Followers1.7K
- Likes6.4K
ALS Uncensored 🏴☠️ retweeted
We are saddened to learn of the passing of Sammy Basso on October 5, 2024. As the oldest known person with classic #progeria, Sammy was a passionate advocate who dedicated his life to research, earning a master’s degree in molecular biology.
Through his commitment, Sammy left a legacy that teaches us the power #RareDisease patients have to become experts on their own diseases and drive research forward. Thank you, #SammyBasso. #RIP @Progeria
ALT Sammy Basso speaking at a podium at a Progeria Research Foundation event.
ALS Uncensored 🏴☠️ retweeted
Strongly positive data presented by @CleneNano as well as PIs @MeritCudkowicz and Bob Bowser on the Ph 2 and EAPs in CNM-Au8. Seeking regulatory approval for a global Ph 3 trial in #ALS in early 2025.
ALS Uncensored 🏴☠️ retweeted
In lieu of the first Detroit Tigers playoff series win in over a decade 👀🤩
We are delighted to give away a free Motor City Gritties shirt #RepDetroit
RT this post for a chance to win!!
And let’s keep the Grit train rolling!!!!
ALS Uncensored 🏴☠️ retweeted
Went to Walk to Defeat ALS this morning. The faces change every year. The stinking disease persists. We need to do better… a whole lot better.
ALS Uncensored 🏴☠️ retweeted
Some Association needs to start rating websites by accessibility. Save the Blinks! #ALS
ALS Uncensored 🏴☠️ retweeted
Wait? Q: Isn't this exactly what was admitted (then derided) from the #NurOwn Phase 3 trial results? Seems to me the plan here is to maximize any result in any subgroup 😱 to ensure an approval. But for who? Patients with FRS-R of 40 and up? So another Radicava. Awesome. And I'll bet the primary endpoint isn't a 1.25 point reduction in slope either. Takers? What about the fact both ingredients have @US_FDA black box warnings? #endals
ALS Uncensored 🏴☠️ retweeted
Hey! @KevinHart4real Apologies for callIng you out in public, but I couldn’t find your number.
I see you trying to WORK HARD, but do you know who really worked hard? Jerry Lewis. On top of everything else that Jerry accomplished, what made him the King of Comedy was his dedication to the Muscular Dystrophy association and the Labor Day telethon.
Now, the opportunity to pick up Jerry’s crown is yours! The @TomBrady Roast was the best laugh in years, and God knows this country needs to find our sense of humor again. Great comedy needs to make a comeback, and you are the one to make it happen!
I loved your performance with @BryanCranston in the Up Side, and I show your movie to my caregivers. It’s obvious you understand some of our plight. I have #ALS and here is my pitch:
Take Jerry’s place and revive the 24 hour Labor Day telethon on behalf of ALS. Base it around comedy and entertainment while raising money and awareness. The timing is perfect. It’s the 10th anniversary of the Ice Bucket Challenge, ALS is becoming more prevalent and affects everyone yet has no cure. There is no shortage of people impacted and filling 24 hours with a star studded line up would take less than a day with your leadership.
I figured you, me and @danorlovsky7 could cohost. We could ask @HopOnACure , @PearlJam and @SteveGleason if they have any friends who would be interested in joining? You could be the Bob Geldoff of ALS!
I guess the question is- can you work as hard as a guy that can’t move, and types with his eyes?
My DM is open…
ALS Uncensored 🏴☠️ retweeted
A professional bear guide demonstrates what to do if a bear charges at you.
ALS Uncensored 🏴☠️ retweeted
This is a terrific resource from @iamalsorg. I’d encourage @TeamGleason, @ALSTDI, @ProjectALSorg, @LiveLikeLou4, @youralsnetwork and others to add programs to this calendar.
Have an upcoming event that the ALS community at large should know about? Wish there was one place to look for all of those events? Look no further than the ALS Calendar! iamals.org/action/als-calend…
ALS Uncensored 🏴☠️ retweeted
One of the key tests used to diagnose ALS, the “needle EMG” is typically done alongside nerve conduction studies. bit.ly/3VcInPg
#ALS #AmyotrophicLateralSclerosis #ALSCommunity #LivingWithALS #ALSAwareness
ALS Uncensored 🏴☠️ retweeted
To our new followers: welcome, welcome, welcome! We're so glad to have you join us in the revolution against ALS. An easy way to stay up to date with everything we're doing is to sign up for our email communications. Join the movement: iamals.org/action/join-the-m…
ALS Uncensored 🏴☠️ retweeted
We are so grateful to have the education & mentorship from the very best about the “New My ALS Decision Tool on Genetic Counseling &Testing for Family Members” from @lesturnerals & “Northeast ALS Consortium: ALS (CRLI) #atriskALSFTD #ALS #FTD @alshopefoundation @end_the_legacy
ALS Uncensored 🏴☠️ retweeted
Almost as soon as someone is diagnosed with ALS, you’re also likely told to apply for social security disability benefits (SSDI). But what happens if you don’t immediately qualify to receive the benefits? This resource outlines what you can do: iamals.org/get-help/understa…
ALS Uncensored 🏴☠️ retweeted
ALS sucks
Every little bit helps
fundraise.als.net
O/U is 9.5 birdies
@TravelersChamp
@ChuckHabz
@ALS100Holes
@shanebacon
ALS Uncensored 🏴☠️ retweeted
Orlovsky is a real one for this. 🙏🏼🙏🏼🙏🏼
Lemme just say I hate how good at golf my big brother @stevehaberstroh is. I love that he’s playing 100 holes *in one day* to honor Mom and raise $ for ALS. @ALS100Holes #EndALS
ALS sucks
Every little bit helps
fundraise.als.net
O/U is 9.5 birdies
@TravelersChamp
@ChuckHabz
@ALS100Holes
@shanebacon
ALS Uncensored 🏴☠️ retweeted
Have you registered for our upcoming webinar? Join us as Dr. Richard Bedlack, presents:
Promising Alternative and Off-Label Treatments for ALS. Register Here ➡️us06web.zoom.us/webinar/regi…
