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Perspective | Audi Field opening and a tragedy trigger lifetime of memories for D.C. area soccer family wapo.st/2A8N0DA?tid=ss… #dcu #mls

The #ALS community presented recommendations regarding the FDA's draft ALS Guidance document at a day-long event on 7/12. We recently submitted the formal Workshop report & recommendations to the FDA. Learn more: bit.ly/2NhH0OU. #MND #ALSAdvocacy #ALSResearch #ALSFDA

AMG Among Founding Donors to Establish The Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital on.mktw.net/2SiGFcO

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Today we announce the release of our Principles for Urgent, Patient-Centered ALS Clinical Trials: a series of recommendations to clinical trial sponsors & regulatory bodies worldwide. You can read a blog post on these Principles here: bit.ly/2L9K2AZ #ALS #ALSresearch

Sandy Morris Also if the design has the effect of discouraging early adoption of NIV, either through their exclusion criteria or by removing patients from the trial when they start NIV, I would argue it violates the guidance. You are negatively impacting an important part of standard of care.

The Patient and Caregiver Advisory Committee began working on the FDA guidance in 2015. 9 of 19 patients have since died. We are pleased that FDA released a final version and believe it is a positive step for the ALS community. Here is our response bit.ly/2VkhpFK

My once-vibrant husband died of ALS, and my complicated grief is deep washingtonpost.com/health/my-once…

So Ady Barkan, Angelina Fanous, axeALSFoundation, ALS Advocacy Phil Green Stephen Finger Sandy Morris No More Excuses ALS Watchdogs! The ALS Association ALS TDI Muscular Dystrophy Association, want to help make this dream real and challenge our collective 250,000 followers to sign on? #DoSomethingGreat

From 4 years ago. Make sure you watch the video. speed4sarah.com/im-not-done/

Finally some good news, scientists discovered a treatment that can reduce COVID19 transmission by 70%, and its just a piece a cloth you wear in front of your dumb fucking face

RT if you think this country should honor and memorialize heroes of the Civil Rights Movement like Congressman John Lewis rather than white supremacists like Edmund Pettus. johnlewisbridge.com

Tyler Childers surprise releases new album, asks fans to "stop being taken aback by Black Lives Matter" in powerful video message rol.st/3mGywPJ

“We are all ALS,”

All we need now is 3 points!! #OnlyForward

Guest Post. James Finger. stephenfinger.wordpress.com/2022/05/06/gue…

My insurance w/ BCBSIL only covers riluzole (generic ALS drug) if filled through Accredo Specialty.   Out of pocket ”negotiated rate” for one month: $840. Ordered three month supply without insurance from Mark Cuban Cost Plus Drug Company Cost: $33.60. The ALS Association Muscular Dystrophy Association I AM ALS