Wife and mom to 2 daughters. Former ICU RN. Director of Pulmonary & Critical Care. Diagnosed with ALS July 29, 2020 still working and hoping for a cure!!
@VPResearch_ALS@KRob8753@onein300@brainmatters10@WesReynoldsMD@AANMember Many neuros kept saying "we need more data" w/o realizing that is precisely the purpose of P4 trial & AA -- as long as the P3 data is reasonably likely to predict a clinically meaningful benefit based on surrogate & intermediate endpoints supporting P3 endpoints.
#NurOwnWorks
RT @alsassociation#WhateverItTakes my a#%.. @andersoncooper@60Minutes Look at the beautiful people we are losing DAILY to #ALS while the chief profiteers of the Ice Bucket Challenge ignore the cries from patients begging for #NurOwn Please investigate, we wonโt stop asking.
Another deadly wait for a drug that increased survival by 70% in 36 pALS in expanded access. Clene is now watching @US_FDA to see what it does on #AMX0035. We are losing so many good people due to the ALSFRS-R score: aka, a 12 question survey #DYINGWAITING
https://t.co/8lgWEBNzxy
This #ALS warrior would be an amazing interview. Viewers could fully understand what #ALS patients endure on daily basis just to survive. This poorly-understood illness needs more public awareness. Spend a day with Sandy. @andersoncooper@60Minutes#drugsinbodies@BrainstormCell
@DrCaliff_FDA @HaterAls @shellymckenna@SenatorDurbin @leanne_yacyshyn I see u on CNN talking about baby food. Do u ever address ALS? U said formula comingโ ok good I had kids and grandkids too! ALS people are dying! What are u doing about this!??Need drugs!
This @angelaganote als association still sitting on about 70 to 80 million of ice bucket challenge cash. Took ppp money, and gave top executives 250,000 in bonus money. Block patients who ask questions. @huntGypseaSoul @MarkSBerardi513@Ml1969@KathyCo74123384