Patients with Amyotrophic Lateral Sclerosis Can Now Change the TV Channel with Just Their Eyes

For rare disease patients who face physical disabilities, even seemingly simple tasks can pose extreme difficulties. For instance, changing the channel on the television. Comcast Corp. previously created a voice…

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How do You Find Strength as Amyotrophic Lateral Sclerosis Causes Your Body to Weaken?

According to a story from princetoninfo.com, Sara Cooper was diagnosed last November with amyotrophic lateral sclerosis. Sara has had an active career as an event planner, marketing consultant, and real…

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A New Way to Study Disease: Scientists Have Recreated a Blood-Brain Barrier Outside the Body
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A New Way to Study Disease: Scientists Have Recreated a Blood-Brain Barrier Outside the Body

  The blood-brain barrier is a “gatekeeper” that prevents toxins and foreign matter in the bloodstream from traveling to the brain. Check Orphan recently carried an article that had been…

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Scholarships are Available for the 2019 International Pain Summit Which Will be Held in LA this November

IPain The International Pain Foundation (IPain) is a nonprofit organization dedicated to supporting those with chronic pain due to neurological, musculoskeletal, inflammatory, degenerative, and emotional conditions. They aim to improve…

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New Partnership Aims to Develop New Mobility Controls for Amyotrophic Lateral Sclerosis Patients
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New Partnership Aims to Develop New Mobility Controls for Amyotrophic Lateral Sclerosis Patients

According to a story from ucf.edu, a new partnership between Mayo Clinic and Limbitless Solutions is planning initiate a new clinical trial that aims to improve mobility options for patients…

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Critical Research Into Amyotrophic Lateral Sclerosis Therapies Gets Funding Boost
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Critical Research Into Amyotrophic Lateral Sclerosis Therapies Gets Funding Boost

According to a story from Alabama News Center, a scientist affiliated with Southern Research, Dr. Rita Cowell, has been hard at work researching new potential treatments for amyotrophic lateral sclerosis,…

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The FDA, Congress, A Young Woman Dying of ALS, Her Physician, and Her Parents Are All Struggling Over Access to an Untested Therapy

  The Hermstads of Spencer, Iowa lost Jaci’s twin to ALS and now they must watch Jaci, rapidly descend into the depths of the same disease. Jaci has a rare…

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Experimental Treatment for Genetic Amyotrophic Lateral Sclerosis Shows Potential in Trial

According to a story from BioSpace, the drug developer Biogen recently released interim results from a Phase 1/2 clinical trial. This clinical trial is testing the drug tofersen, which is…

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New Research With the Potential to Alleviate Symptoms of Parkinson’s, Alzheimer’s and Charcot-Marie-Tooth Disorders

  A recent article in the neuroscience section of the Medical Express reports the results of a study conducted by researchers in the Charcot-Marie-Tooth/Hereditary Neuropathy Center at internationally acclaimed Cedars-Sinai.…

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Could This Experimental Therapy be a Breakthrough for Genetic Amyotrophic Lateral Sclerosis?
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Could This Experimental Therapy be a Breakthrough for Genetic Amyotrophic Lateral Sclerosis?

According to a story from fox43.com, an experimental therapy for the genetic form of amyotrophic lateral sclerosis (ALS) has been termed "game changing." A study that will soon be presented…

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Drink One For Dane: Dutch Bros Coffee Hosts 13th Annual Amyotrophic Lateral Sclerosis Fundraiser This Friday, May 10th

Dutch Bros Coffee is hosting their 13th annual fundraiser for amyotrophic lateral sclerosis (ALS) this Friday, May 10th, 2019. It's called "Drink One for Dane" in honor of Dane Boersma,…

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Despite Loss of Speaking Ability, This Amyotrophic Lateral Sclerosis Patient Testified to Congress in Support of Medicare for All
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Despite Loss of Speaking Ability, This Amyotrophic Lateral Sclerosis Patient Testified to Congress in Support of Medicare for All

According to a story from The Intercept, Ady Barkan's life is slowly slipping away as his amyotrophic lateral sclerosis continues to progress. Despite this, Ady has developed a reputation as…

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Research Aims to Understand the Mechanism of Neuron Death in Amyotrophic Lateral Sclerosis
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Research Aims to Understand the Mechanism of Neuron Death in Amyotrophic Lateral Sclerosis

According to a story from news-medical.net, the process that causes the neurons responsible for voluntary muscle movement in amyotrophic lateral sclerosis (also known as Lou Gehrig's disease) to die is…

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Clinical Trial Initiated for New Technology That Could Allow Amyotrophic Lateral Sclerosis Patients to Communicate

People living with rare diseases such as amyotrophic lateral sclerosis (ALS) or muscular dystrophy as well as those who have suffered from a stroke or spinal cord injury often experience…

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Could a “Gene Expression Atlas” Unlock the Secrets of Amyotrophic Lateral Sclerosis?

According to a story from MD Magazine, the team at Spatial Transcriptomics has utilized an innovative computational approach in order to map gene expression on the spinal cords of patients…

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The Struggles of being a Rare Disease Patient in China

The State of Rare Diseases in China The Illness Challenge Foundation (ICF) is an organization devoted to easing the burdens that rare disease patients living in China face. They accomplish this…

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After Diagnosis, a Yale Alum Establishes Nonprofit Focused on Amyotrophic Lateral Sclerosis
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After Diagnosis, a Yale Alum Establishes Nonprofit Focused on Amyotrophic Lateral Sclerosis

According to a story from the Yale Daily News, Brian Wallach, class of 2003, was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, in November of 2017. Although being…

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