Awareness 4 ALS

Avid advocate for #ALS patients. Fighting to make promising treatments available to ALL now. #EndALS

[Awareness 4 ALS @awareness_als]

Mark Bedwell has #ALS and 5 months ago was struggling to walk. He is participating in the @BrainstormCell phase 3 clinical trial for #NurOwn and is now running down the halls! This treatment needs to be available to ALL patients with ALS NOW - ALS doesn’t wait. #endALS

[Awareness 4 ALS @awareness_als]

Whelp... we may have waited too long. Dr. is saying his breathing scores might be too low to be sedated for the procedure.

[Awareness 4 ALS @awareness_als]

Getting the g-tube presentation. Dad seems ok with it! Super relieved that he’s deciding to get one, but worried about the thought of surgery. His breathing isn’t great.

[Awareness 4 ALS @awareness_als]

@surviveALS @gregkochak @Cylebo @MaryKayTurner1 @MattBellina3 My dad did that and I think it helped, but he still slowly progressed and eventually stopped. Now that he doesn’t do that anymore I think he’s progressing faster.

[Awareness 4 ALS @awareness_als]

We have clinic tomorrow and I know my dad needs a g-tube, but he’s worried if he gets one he won’t be able to get #NurOwn if/when it’s ready. Does anyone have any insights on that?? @Cylebo @MaryKayTurner1 @MattBellina3

[Awareness 4 ALS @awareness_als]

@WolfsRidgeBrew Here’s a chance to create a great new beer and support a great cause!! Would love to see what you come up with! 🍻 #AlesforALS https://t.co/CZtzejAovW

[Awareness 4 ALS @awareness_als]

@jimmykimmel Thank you so much for everything you’ve done to support ALS. For the first time ever #ALS patients have real hope. Please watch this video to learn about the promising treatments and our desperate need to get them to patients ASAP. https://t.co/PYmydwsZSu

[Awareness 4 ALS @awareness_als]

@TimTMcDaniel’s funeral was yesterday. He is loved and missed by many. #ALS took so much from him, but he didn’t let it take his humor or faith. He wrote about his fight with ALS here - thank you Tim for sharing your story with us. https://t.co/e77RWI2W0f

[Awareness 4 ALS @awareness_als]

My good friend @TimTMcDaniel passed away last week. I’m so sad and shocked by how fast his #ALS progressed. In October he wheeled his daughter down the aisle... and now he’s gone.

[Awareness 4 ALS @awareness_als]

Just picked up some @benandjerrys after our local ALSA chapter meeting where I met some great people. Now to find a spoon. #IceCreamForALS 😋

[Awareness 4 ALS @awareness_als]

@alsadvocacy @CoreyPolen @benandjerrys @US_FDA @Tucker_Barnhart @AndySwan @bsw5020 @ChrisHaganIndy @ProjectALSorg For sure! I’ll try to get some with my dad on Wednesday too!

[Awareness 4 ALS @awareness_als]

@bsw5020 @dougulman @Pelotonia!!! OMG my two worlds colliding. Living in Columbus, this is the epitome of a non-profit, disease-fighting org. Those arrows are LITERALLY EVERYWHERE! Can’t wait to see @iamalsorg everywhere too!!!

[Awareness 4 ALS @awareness_als]

Amazing work, Brian! You SOOOOO deserve this! So so so excited for this and to see what you do next! 🙌🏻

[Brian Wallach @bsw5020]

So this just happened...@iamalsorg is in @people.

Together, we. will. change. the. world. @cziscience @jasonduaine (thank you for having the courage to share this story)

https://t.co/DaVNfqvqo5

[biohub @biohub]

We’re proud to fund @iamalsorg to develop tools & build a movement that connects patients, caretakers, doctors, scientists, foundations, corporations + the public in the fight to #EndALS.

Read more via @people https://t.co/Lq8Dyod9ls

[Awareness 4 ALS @awareness_als]

Thank you @cziscience and @iamalsorg for the great strides in elevating the conversation around #ALS and other rare diseases.

[biohub @biohub]

Today we’re announcing funding for @iamalsorg, a patient-led organization dedicated to raising awareness of #ALS and empowering patients to lead the search for a cure

[Awareness 4 ALS @awareness_als]

@CoreyPolen @alsadvocacy Reason stands to believe that if the @US_FDA only approves treatments proven to be effective, then yes. If they don’t, then it could be argued that safety and tolerability are all that’s needed for approval.

[Awareness 4 ALS @awareness_als]

So I was curious to see what the comments on this were like, and I was not disappointed. All but one of them are about #ALS. I love this community. 💕

[Awareness 4 ALS @awareness_als]

@CoreyPolen @alsadvocacy Nice!! He may have started in the healthcare industry, but worked in the auto industry most recently. He spent a lot of time at Nationwide.

[Awareness 4 ALS @awareness_als]

@alsadvocacy Actuary. It’s in a google docs spreadsheet. I’m sure he’d be happy to share and duplicate for a template if others want to track/record their progression as well.