Top Tweets for #NotQuietly
This was 2 years in the making, but in the end, community comments pushed CMS to make the right decision. Your voices matter! Huge thanks to all the advocates and the ITEM Coalition. #NotQuietly
Centers for Medicare & Medicaid Services has announced that Medicare will now include power seat elevation on Medicare-covered power wheelchairs.
Thank you to the ALS and wheelchair communities for your help and support in advocating for this policy change.
@shellyhoover Thank YOU! The voice of the ALS community is everything and why it’s part of our mission to preserve it. #NotQuietly
This is the week 10 years ago when I met these crazy incredible people. Tears, cheers, and perspective lead the headline, but laughter and gratitude are close seconds. #NotQuietly
Worth the watch, but I'm biased of course. Tears. Chills. Perspective. I'm inspired by the younger version of me and Michel. We all have a time line. Live!
Well done, Jay and Stephanie! #NotQuietly
This morning Jay was among those who addressed the FDA regarding access to treatments. He HASN’T lost his touch...thanks to @alsassociation and @TeamGleason for the invitation. Let’s hope the @US_FDA hears us.
And we won't let this drop.
If you locked people w ALS and caregivers out of an ALS research conference in 2021, we expect change in 2022.
#notquietly
I can’t believe I have to say this, but if you host an ALS research conference there is no reason—none—not to allow patients, caregivers or advocates to attend. And no one should sponsor an event without confirming that patients, caregivers and advocates are invited.
That zoom was filled with booms and ALS activists changing the world of ALS from yesterday to the future of what will be. There are too many people to list, but the convo between @dantate2 @bsw5020 @AdyBarkan & @SteveGleason should be its own reality series. #NotQuietly
People and families living with ALS refuse to go unheard. In the last 5 years, 3 laws have been passed that were forged by those living with the disease...and they won’t stop now. #NotQuietly #NoWhiteFlags
The House just voted YES for the ALS Social Security Disability Act! The Senate overwhelming approved the legislation last week! Off it goes to be signed into law and giving people and families living with ALS financial relief! #NoWhiteFlags
If you talk only of defeat, expect to lose. If you promise great victories without any basis in fact, expect to be proven wrong. If, however, you put in the work each day to change the world, you may just succeed.
Now if you will allow a moment on my soapbox I want to talk ALS.
If you have @HBO, check out Real Sports with Bryant Gumbel to see Steve and Michel's interview with Jon Frankel tonight, Tuesday the 20th, at 9pm CST. #NotQuietly #NoWhiteFlags
Forgive me for being a leftie, feminist, activist human rights lawyer, but if one government - even if just the one, although they are proliferating at the minute - think we would so easily stand down the second we are attacked, they need to look at our predecessors. #notquietly
I dunno. I’m just thinking that maybe it’s not a completely bad thing that we have these legal protections that apply equally to all of us. So if the state does try to apply the law wrongly, or break it, we can defend ourselves.
But prob enough lefty activism from me for tonight
We couldn’t agree more. It’s also time to take care of those living with the disease until that time! We’ll keep passing along and helping others until we get there! #NotQuietly
This. @alsassociation, @MDAorg, @ProjectALSorg and @TeamGleason, where you at? Also, I see you @everything_als—you rock.
@CoreyPolen @iamalsorg @alsassociation @MDAorg @TeamFrateTrain @LiveLikeLou4 @ProjectALSorg @ALSTDI Team Gleason led the charge that passed two laws and will always fight for legislation that supports the ALS community. #NotQuietly
Thank you @Goal_Cast for sharing @SteveGleason & Michel's story. We know this story & live it & others each day, but you still managed to give us chills and a few tears. #NotQuietly @drewbrees @sfujita55 @Saints
https://t.co/KxL53Q2iK6
If you have ALS or know someone who lives with the disease or lived with It, please add your name, so we can all speak as one voice. Let’s bring these names out of the shadows! #NotQuietly
For too long the ALS fight has been waged in the shadows. Together we will end that.
Here’s how:
1. Enter your name
2. Give a face to ALS
3. Use this map to show friends and Congress that this disease affects every corner of the U.S.
#EveryCommunity
https://t.co/EPI3aTO2J0
State #15: LA ✅
THE highlight was meeting my hero @SteveGleason, but it was Michel who saved me at Mile 23 of the marathon. I was having a tough race and then I saw her cheering! It truly touched me and reminded me: #nowhiteflags #notquietly
While there is more energy around finding treatments or a cure for ALS right now than ever before, please do NOT forget those living with ALS now. People need help in every aspect of their lives and the 2 efforts aren’t mutually exclusive. Until there’s a cure... #NotQuietly
@alsadvocacy @BryanWayneMusic @hodakotb @MitchAlbom Also look for @chefbrianlandry on @TODAYshow today! He’s a @TeamGleason supporter and an amazing human. #ALSawareness #NotQuietly #LoveChika
Thank you @pjgreen for always leading. We are so grateful to have you join the Team Gleason Board of Directors and continue leading us as we all fight ALS and help those living with it. #NoWhiteFlags #NotQuietly
A new research center at @UWMedicine will explore muscle health and disease, in hopes of finding therapies for conditions like #ALS. This is something @UW alum @pjgreen is excited for: https://t.co/Ixz7KXF3ok
@bsw5020 Way too kind and untrue. I’m just a cog like everyone else who is beyond tired of the status quo in ALS. Too many gone. Too many who fought til their last breath. They, you, and everyone deserves more. Better. Let’s keep changing that. #Together & #NotQuietly
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