ALS Crowd @ALSCrowd

ALS Awareness to empower patients and to close the gap between researchers, patients, and the community. alscrowd.org Joined June 2014

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925
Following

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18

Mayuri Om Saxena @Mayuri_Saxena

5 years ago

#fightals

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The drug making process is too long of a process for ALS patients. Luckily the FDA has recently given orphan drug status to a drug that has already passed phase 1 and 2 and is now including ALS in its phase 3 trial. #fightals #findacure alscrowd.org/fda-grants-orp…

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ALS Crowd @ALSCrowd

5 years ago

A Tourettes syndrome drug could help delay the progression of ALS. #ALS #ALSTREATMENT #Together alscrowd.org/pimozide-curre…

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ALS Crowd @ALSCrowd

5 years ago

For people with Amyotrophic Lateral Sclerosis, sleeping is a stressful time. Sleep disturbances need to be recognized and treated. #sleepingwithALS #ALScrowd #ALScaregiver #fightALS #ALS #lougehrigsdisease alscrowd.org/sleep-and-als/

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ALS Crowd @ALSCrowd

5 years ago

When I heard that senators are writing bills that can help ALS the first thing I had to do was look up this School of Rock video that teaches how a bill becomes a law. Its kinda cheesy but very helpful. -Jake youtube.com/watch?v=FFroMQ…

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ALS Crowd @ALSCrowd

5 years ago

Two pieces of legislation are making their way through congress that could drastically improve the lives of those with ALS. #fightALS #ALSlegislation #ALScrowd #iamALS alscrowd.org/it-is-time-to-…

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I AM ALS @iamalsorg

5 years ago

Join us virtually this Wednesday from 2:30-3:15 pm ET as we discuss both pieces of legislation and ways we can come together to take action to move these policies forward with urgency. Register here: bit.ly/3dXps4d

I AM ALS @iamalsorg

5 years ago

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BrainStorm @BrainstormCell

5 years ago

Congratulations to all #ALSHeros. The recently introduced ALS legislation signifies a turning point for patient driven #ALS Advocacy. Creating new #FDA pathways to early access to promising therapies is the aim of both bills. #EndALS #ALSstateofmind

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ALS Crowd @ALSCrowd

5 years ago

Understanding the role proteins play in ALS progression my be the key to understanding ALS #ALScrowd #crowdcare #ALS101 #whatisALS #lifewithALS alscrowd.org/protein-mishan…

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Columbia University's Zuckerman Institute @ZuckermanBrain

6 years ago

NEW RESEARCH: @ZuckermanBrain scientists have identified a gene called #TBK1 that acts as a double-edged sword in #ALS — first slowing, then accelerating ALS progression in a mouse model of the disease: zuckermaninstitute.columbia.edu/double-edged-s… 1/5

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ALS Crowd @ALSCrowd

6 years ago

Johns Hopkins offers live, interactive map of global coronavirus cases wjhl.com/coronavirus/jo…

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ALS Crowd @ALSCrowd

6 years ago

This is a great step for ALS research! The inconsistency and lack of reliability found in the commonly used ALS Functional Rating Scale (ALSFRS-R) makes for slow progress in curing ALS. ROADS aims to eliminate these inconsistencies and help research progress faster. #CureALS #ALS

NEALS Consortium @NEALSConsortium

6 years ago

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ALS Crowd @ALSCrowd

6 years ago

Is it time for a new self-reported ALS disability test? Many people feel that it is. A group of neurologists have developed ROADS which aims to fix problems found in the ALSFRS-R. #ALS #ALSNews #ALSFRS #endALS, #ALSCrowd #ALResearch alscrowd.org/do-we-need-a-n…

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Senator John Curtis @SenJohnCurtis

6 years ago

Today I spoke on the House Floor to share my concerns with patient access to groundbreaking and life-saving ALS treatments. This is a very personal issue to me as some of my close friends and neighbors have been affected by this difficult disease. #RightToTryAct Speech below:

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ALS Crowd @ALSCrowd

6 years ago

Open Enrollment is now open! Start researching now the best options for you. Enrollment will only be open until December 15th. #OpenEnrollment alscrowd.org/2020-open-enro…

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ALS Crowd @ALSCrowd

6 years ago

Promising Mitochondrial Treatment for ALS Shows Potential in ALS Mouse Model Studies #endALS, #ALSCrowd #ALSAdvocacy #ALSResearch #HealthTree alscrowd.org/promising-mito…

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ALS Crowd @ALSCrowd

6 years ago

ALS is hard because there are so few treatments, but new treatments are just around the corner. Check out this article on a new drug that is moving on to Phase II. #endALS, #ALSCrowd #ALSAdvocacy #ALResearch #HealthTree alscrowd.org/a-new-oral-tre…