ALS Crowd
@ALSCrowd
ALS Awareness to empower patients and to close the gap between researchers, patients, and the community.
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Will Congress Help This 36-Year-Old ALS Patient Waiting for Access to Experimental Drugs? thedailybeast.com/will-congress-… via @thedailybeast
thedailybeast.com
Will Congress Help This 36-Year-Old ALS Patient Waiting for Access to Experimental Drugs?
Mayuri Saxena’s only chance to live is through access to experimental drugs. Now Congress holds her fate in its hands.
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-…
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
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…
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
Johns Hopkins offers live, interactive map of global coronavirus cases wjhl.com/coronavirus/jo…
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=…
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…
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…
@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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