Amyotrophic Lateral Sclerosis (ALS)

Researchers Exploring Disability Perceptions

Researchers at the Psychology of Disability Lab at the University of Michigan in Ann Arbor are exploring the social identity of people with disabilities through a short, anonymous, Web-based questionnaire.

The lab's Disability Identity Project is being headed by principal investigator Adena Rottenstein, a doctoral candidate in psychology.

The study closes the week of Aug. 22, 2011.

May 25 Webinar Focuses on Newly Diagnosed

Every day in the United States, about 13 people receive a diagnosis of ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease).

That’s 5,000 Americans a year who are new to this disease. MDA's ALS Division wants to reach out to these people and their families, encourage and support them, and most importantly, let them know they’re not alone.

ALS Research Briefs

NurOwn stem cell therapy trial set to begin

Biotechnology company Brainstorm Cell Therapeutics announced May 17, 2011, that it has received approval from Israel's Ministry of Health to conduct a phase 1-2 clinical trial of stem cell therapy in adults with ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease).

FUS and ALS: What's the Connection?

 The gene for FUS  was associated in 2009 with some forms of ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease).

Now, overlapping findings from four recent studies have revealed tantalizing clues about the molecular underpinnings of FUS-related forms of the disease.

Research

Intense research is being conducted in many areas related to ALS, from basic science seeking the roots of the disease, to therapy development to find effective treatments.

Research into familial (running in families) forms of the disease also may have relevance for sporadic (nonfamilial) forms, as all ALS cases — regardless of the form — present and develop along similar lines.

Causes/Inheritance

About 5 to 10 percent of ALS is familial — meaning it arises in families in which there is a history of ALS. Several genes associated with ALS have been identified or at least mapped to a specific region of a chromosome.

The other 90 to 95 percent of ALS is sporadic, meaning it occurs without a family history (in other words, "sporadically"). There appear to be genetic variations that influence one's susceptibility to sporadic ALS, even if they don't actually cause the disease by themselves.

Amyotrophic Lateral Sclerosis

Description: 

Thanks to the ALS Ice Bucket Challenge that swept our nation in 2014, more people than ever before know about ALS. MDA is grateful to everyone who participated in this challenge and took the first step to support the fight against this horrible disease.

But we can’t stop there. Uniting through action is what will accelerate progress to defeat ALS.

ALS Research Briefs

Patients Like Me online lithium study utilized social media

An observational study of data self-reported on the online forum Patients Like Me by people with ALS who elected to take the drug lithium carbonate has shown two things:

ISIS-SOD1-Rx: So Far, So Good

Early results of a phase 1 clinical trial of ISIS-SOD1-Rx, an antisense oligonucleotide drug for SOD1-related amyotrophic lateral sclerosis (ALS), show the drug appears to be safe and well tolerated at the lowest dosage level, based on a group of six patients who received 12-hour infusions of it into their spinal fluid.

ALS TDI Webinar Discusses Current Research

The state of the science in ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease), current lines of research, efforts to establish a TDP43 research mouse colony, and a primer on protein-based therapies were the topics of a webcast on April 7, 2011, presented by ALS Therapy Development Institute (ALS TDI) CEO and Chief Scientific Officer Steve Perrin, and colleagues.

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