Manuel Lopez

@alsnewstoday about three weeks .

For many, a diagnosis takes years. How long after the onset of your symptoms were you told you have ALS? #ALSNewsToday #AmyotrophicLateralSclerosis #LivingWithALS

@DrOzdinler very talented family.

Today is the day my brother died. This is his unfinished self-portrait. If he lived, he could have been the next Van Gogh, perhaps even better. He died and my life changed! I forever miss him.

@ScottsFight I wish I had done something like that. I do have a granddaughter that was born right after I was diagnosed. The only only one of my three grandchildren that I could pick up.

Adaptation to the situation is the only path forward in #ALS and eye tracking and understanding how to use it is a critical component. However, eye gaze is intimidating for many and often unapproachable. This new series will attempt to help break down some of the myths and choke points experienced, pALS helping pALS. Check it out.. iamals.org/action/eyegaze…

@bsw5020 I would like to stay at home to be taking care of. that is why the VA redid my house and make it more convenient for me

On Tuesday, Sandra and I were part of a webinar hosted by the White House to discuss new rules that transform long-term caregiving and the care economy. Thank you to the administration for its commitment to improving healthcare for all. whitehouse.gov/briefing-room/…

@leanne_yacyshyn I watch them everyday. I remember when you would buy prizes too. I think it would take to much time.

@aVoice4ALS @BrainstormCell praying

Tomorrow morning @BrainstormCell to provide update on the #NurOwn program for #ALS. Praying the FDA accepted the Phase 3b trial design. Lives depend on it! We KNOW #NurOwnWorks ir.brainstorm-cell.com/2024-04-08-Bra… #EndALS

@sabrevaya Happy wife happy life.

I won!!!!!!!!!!!! Thank you babe 😘😘

@leanne_yacyshyn Same here. Cannot wait for the warmer weather.

anyone hear anything on NU-9 for treatment for als.

@TheBertOfficial praying

For the past 6 months, I have been participating in the Healey Platform Clinical Trial Regimen F…and the double blind placebo period is over. I’m now on the actual medication. I won’t know if I was on placebo until all participants have finished. I’m still walking, talking, swallowing and breathing independently. I really hope this IS the drug. I *feel* that they are really confident on results in phase 3. #als

@alsnewstoday please hurry. praying.

Dubbed the Vision 2030 AI Hub, the platform will be able to translate basic science discoveries into life-changing therapies. See how: bit.ly/4ashGfk #ALS #AmyotrophicLateralSclerosis #ALSDisease #ALSTreatment #ALSResearch

@SteveGMedia @crayne128 praying ,Ive had that happen before. Pretty scary.

The most unnerving aspect of ALS is choking — while eating/drinking or even from air. You feel like you’re suffocating. Today’s choking episode lasted too long & scared the hell out of me. A harsh reminder of how vulnerable we are. A reminder of the need for action to end ALS.

@NaderAlAyaseh @DrCaliff_FDA @FDACBER praying praying

#NUROWN must be approved QUICKLY because the patients “DON’T HAVE TIME TO WAIT”. They deserve a chance @DrCaliff_FDA @FDACBER

@NaderAlAyaseh praying

Today I want to say to those who fight the beast (ALS) God is present and protecting you There are many treatments under trial There are many people who love you, pray , and stand with you There is always hope Stand like a rock in the face of disease

anything news on nu-9? Thanks

@NaderAlAyaseh praying

Regulatory flexibility should be applied to 100% FATAL #ALS #NUROWNFORLIVE

@alsassociation i am a vals

Many people have a connection to ALS and some may not even realize it. Perhaps your connection to ALS is a parent, a friend, a coworker, or even just reading this post. Comment down below what connects you to ALS.

@NaderAlAyaseh goatee praying

We need FDA to approve #NurOwn as it halted ALS progression in those who got it in Phase 3 & EAP There is still hope

@bsw5020 goatee

In my house, we are evenly divided about whether to keep my facial hair or shave it off. To see a picture of what I look like, go to the next tweet on this thread. So I wanted to put the question to you:

@bsw5020 praying for a treatment.

Most days, I fall asleep with a bit of guilt for still being here and a lot of gratitude that I still am. Good night moon.