Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…
NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
After gathering input from patients, researchers, and advocates, the U.S Food and Drug Administration (FDA) has released new guidance on the development of therapies for amyotrophic lateral sclerosis (ALS). Among its recommendations, it is advising more communication with companies early on in the product development process, access to…
Being a caregiver for a spouse with ALS is a heavy load, and at some point it becomes too much for one person to handle. When ALS took from my husband the ability to walk, I helped him move from his wheelchair to the bed. He would sleep most of…
A detailed analysis of the communication network between nerve and muscle cells in turtles has shed new light on how movement is controlled and maintained. These findings on how motor nerve cells communicate may help scientists better understand the underlying mechanisms of amyotrophic lateral sclerosis (ALS) or spinal injury.
A week ago last Sunday, I spent a portion of the day, as I often do, going to church. Well, not quite “going.” Owing to the challenges of readying and transporting me, I participate in worship via a livestream of the service. The…
Kadimastem’s experimental cell therapy — AstroRx — may slow disease progression in patients with amyotrophic lateral sclerosis (ALS), according to interim results in a first group of patients treated in a Phase 1/2a study. AstroRx consists of functional healthy astrocytes — cells that support and protect neurons…
If you’ve ever used the drive-thru lane to order a meal, then you know that the experience can range from easy to downright annoying. My husband and I have suffered through fast-talking order-takers with squeaky voices, but when we encounter the dreaded malfunctioning speaker, we know that we’re in for…
Synchron Inc. has successfully completed the first brain implantation of the Stentrode as part of a clinical feasibility trial. The first-in-human study is designed to assess the potential of this technology to restore communication in patients who suffer from severe paralysis, including those with amyotrophic lateral sclerosis (ALS). The Stentrode…
The Sean M. Healey & AMG Center at Mass General has chosen five “promising” candidate treatments from among 30 applications to test in its first platform trial for amyotrophic lateral sclerosis (ALS). The platform trial — a type of a clinical study that tests the efficacy of multiple…
A toxin produced by algae may contribute to the development of amyotrophic lateral sclerosis (ALS) by lowering the stability of a protein in the brain, a new study suggests. Titled “β-Methylamino-L-alanine substitution of serine in SOD1 suggests a direct role in ALS etiology,” the study was…
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