The United States has enacted legislation to ensure permanent funding of speech-generating devices that allow people with degenerative diseases such as ALS to communicate. Both houses of Congress unanimously approved the original version of the Steve Gleason Act that was enacted in 2015 but set to expire this year. The…
Extension of US Law Ensures Funding of Speech-Generating Devices for ALS Patients
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Filmmaker Finishes Film Project With Advanced ALS
In this video from CBS Sunday Morning, follow the journey of award-winning filmmaker Simon Fitzmaurice as he completes his pet project, a film called My Name is Emily, despite being diagnosed with amyotrophic lateral sclerosis (ALS) eight years ago. MORE: Explaining the progression…
The amount of RNA molecules present in the blood and central nervous system of amyotrophic lateral sclerosis (ALS) patients seems to play a role in the onset and development of the disease, a study published in the journal Scientific Reports showed. A better understanding of the involvement of RNA molecules…
Increasing the levels of a neurotransmitter-generating brain enzyme that is in short supply in paralysis disorders restored movement in a fly model of ALS, an Italian study shows. Bolstering the Gad1 enzyme’s levels also led to the return of a pre-disease pattern of nerve cell organization, the researchers said. The…
Last week, I had the opportunity to attend a fun, social, gala event. Even though the occasion was filled with presentations and entertaining activities, my best take-home memory came from the special moment I shared with another attendee. It happened during a short lull in the program. Presentations…
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Who Was Lou Gehrig?
Amyotrophic lateral sclerosis (ALS) is commonly referred to as Lou Gehrig’s disease. But who was Lou Gehrig? Henry Louis Gehrig was born in New York on June 19, 1903, at a time when very few people were aware of ALS, the progressive and neurodegenerative disease. Gehrig grew up to…
University of North Carolina researchers have identified the DNA sequence in a virus that lets it deliver treatments for neurodegenerative diseases to the brain. The finding may pave the way for the development of improved and safer gene therapies for diseases like ALS, the team said. A number of gene therapies…
Part two of a series. Read part one here. To help you get started with creating your perfect treatment plan for depression, I will share my experience with two types of therapy that have been especially helpful as I learn to cope with living with ALS. I…
David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In mid-2013, while in Arizona, Glebe was diagnosed with pancreatic neuroendocrine cancer (PNET) — the same disease that killed Apple’s founder and CEO Steve Jobs. After three years of progress…
Researchers in Germany studying standards of care in amyotrophic lateral sclerosis (ALS) patients found a high unmet need for assistive technology devices. The cohort study, “Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach,” was published in the journal Amyotrophic Lateral Sclerosis and…
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