ALSCrowd's profile picture. ALS Awareness to empower patients and to close the gap between researchers, patients, and the community.

ALS Crowd

@ALSCrowd

ALS Awareness to empower patients and to close the gap between researchers, patients, and the community.

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…


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


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/


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…


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-…


ALS Crowd reposted

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

Today, the House and Senate announced bills that will create real pathways to provide faster and broader access to therapies for #ALS. This movement is working and our congressional leaders are listening, all because of you. 📖👇 bit.ly/3ccyPLw



ALS Crowd reposted

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

BrainstormCell's tweet image. 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

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


ALS Crowd reposted

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

ZuckermanBrain's tweet image. 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

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

Today's webinar recording is now available! ROADS to a better ALS outcome measure: the new Rasch-Built Overall ALS Disability Scale (ROADS) vimeo.com/392790720?ref=…

NEALSConsortium's tweet card. ROADS to a better ALS outcome measure: the new Rasch-Built Overall...

vimeo.com

Vimeo

ROADS to a better ALS outcome measure: the new Rasch-Built Overall...



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…


ALS Crowd reposted

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:


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…


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


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…


NurOwn Stem Cell Therapy for ALS Opens Phase 3 Clinical Trial #endALS, #ALSCrowd #ALSAdvocacy #ALResearch #HealthTree alscrowd.org/nurown-stem-ce…


New Insight into Neuronal Cell Decay May Hold Answers to Further ALS Treatment #endALS, #ALSCrowd #ALSAdvocacy #ALResearch #HealthTree alscrowd.org/new-insight-in…


ALS Crowd reposted

@Brainstormcell convened an ALS advocacy round table discussion on Wednesday. Thanks to @alsassociation @ALSTDI @ALSKnights @ComCareALS @iamalsorg @ProjectALSorg @PVA1946 @als_now @ALSHF for joining us! #NurOwn #EndALS. 2/2

BrainstormCell's tweet image. @Brainstormcell convened an ALS advocacy round table discussion on Wednesday. Thanks to @alsassociation @ALSTDI @ALSKnights @ComCareALS @iamalsorg @ProjectALSorg @PVA1946 @als_now @ALSHF for joining us!  #NurOwn #EndALS. 2/2
BrainstormCell's tweet image. @Brainstormcell convened an ALS advocacy round table discussion on Wednesday. Thanks to @alsassociation @ALSTDI @ALSKnights @ComCareALS @iamalsorg @ProjectALSorg @PVA1946 @als_now @ALSHF for joining us!  #NurOwn #EndALS. 2/2
BrainstormCell's tweet image. @Brainstormcell convened an ALS advocacy round table discussion on Wednesday. Thanks to @alsassociation @ALSTDI @ALSKnights @ComCareALS @iamalsorg @ProjectALSorg @PVA1946 @als_now @ALSHF for joining us!  #NurOwn #EndALS. 2/2

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