Top Tweets for #MakeRightReal
When will enough children have lost their parents and children lost their parents for ALS to no longer be ignored? #NotIncurable #NotUntreatable #MakeRightReal
It is sad that I had to lay in a grave to be heard. It was very sad for my Mom to see. We with ALS would like to secure a Congressional Hearing w/ the FDA. Will you support our request? Please empathize w/ our urgency. @RepAnnaEshoo @SenFeinstein @AlexPadilla4CA @KTVU @kron4news
Tonight, I spoke before the House on behalf of ACT for #ALS and all the courageous men and women — like @Mayuri_Saxena & @bsw5020 — who, despite the cruel suffering inflicted on them by this unforgiving disease, have worked so selflessly for the community. https://t.co/x6fxnU68KX
This👇and 5 days with a debilitating spinal headache and an emergency blood patch procedure. Because when you have a 100% fatal illness, any chance at life is worth taking. #Nurown #MakeRightReal #IamALS #PromisingPathways #ACTforALS
The #Nurown trial included:
- 14 trips to MGH
- 1 pelvic bone marrow extraction
- 3 spinal injections of drug or placebo
- so many spinal taps I lost track
- countless blood draws
Do I know if I got the real thing? No.
Would I do it all over again? YES.
*ACCESS IS HOPE*
At the beginning of 2020, the number of congressional leaders supporting a Senate bill that will eliminate the 5-month waiting period to access disability benefits was stalled at 50.
Then, those most impacted by ALS stepped in and got 17 more.
Every. Single. Day. They Lead.
Yes, yes, yes @bsw5020! We are ALL in this together. ALS doesn’t take sides. We need ALL of our voices to be heard. We need support from ALL sides in Congress and the Administration. @iamalsorg @FinishALS @als_now #CuresForAll #NoMoreExcuses #MakeRightReal #ALSYouGone
There is not a red state version of ALS and a blue state version of ALS. There is only ALS.
There is not a pro-ALS group and anti-ALS group, there is 1 movement to end ALS.
We speak with different words but seek the same future. We fight for each other and will be the cure.
This goes to show that statistics are not just numbers, but an eye - opener and overview of how dangerous the lives of children can be, if the trend continued. @unicefindia #MakeRightReal #UNCRC30 #ForEveryChildEveryRight
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