YHS '95. Princeton '99. Duke '08. Father of two, husband of 1. Former Econ prof at U. South Carolina. USMNT, Atlanta United, Gamecock fan. Living with ALS.
Atlanta, GA
Joined April 2012
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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 @costplusdrugs Cost: $33.60. @alsassociation @MDAorg @iamalsorg
“We are all ALS,”
"Today science is finally producing therapies that may be able to slow or stop this disease. This reality must be matched by a new regulatory approach that speeds promising therapies to ALS patients." - @bsw5020
📽️ youtu.be/1sPM-5ShMX4
Stephen Finger retweeted
Tyler Childers surprise releases new album, asks fans to "stop being taken aback by Black Lives Matter" in powerful video message rol.st/3mGywPJ
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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/
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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
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So @AdyBarkan, @NotSoVanilla, @stevens_nation, @alsadvocacy @pjgreen @srfinger @sandymorris333 @als_now @alsassociation @ALSTDI @MDAorg, want to help make this dream real and challenge our collective 250,000 followers to sign on? #DoSomethingGreat
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My once-vibrant husband died of ALS, and my complicated grief is deep washingtonpost.com/health/my…
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
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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.
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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
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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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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
Stephen Finger retweeted
Perspective | Audi Field opening and a tragedy trigger lifetime of memories for D.C. area soccer family wapo.st/2A8N0DA?tid=ss_tw&ut… #dcu #mls
@AmericanAir you never disappoint. No matter how many times I call ahead, how many times I check in at the desk, how many legs I have already flown, every single agent is surprised that they have to deal with my wheelchair and lectures me on how I should have told them about it
The amazing thing about computers is that when information is entered in the computer six times in 3 days presumably it could show up on the seventh agent’s machine as well. #ada
I checked in at the desk 2 hours early. I was at the gate 1 hour before scheduled BOARDING. And I get lectured for delaying departure? Minimal competence and decency would be nice. #ada