Amyotrophic Lateral Sclerosis (ALS)

MDA ALS Caregiver's Guide

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The Journey

If you’re reading this guide, it’s probably because someone you care about deeply has ALS.

Last Updated: 
Fri, 03/01/2013 - 16:21

ALS Registry Touts Revamped Website, New Surveys

In hopes of collecting as much information as possible, the National ALS Registry, which opened in October 2010, already is expanding its reach.

Registry officials have made the enrollment process easier and are adding surveys about potential risk factors to the registry’s website.

Everyday Life with ALS: A Practical Guide

Introduction

Receiving a diagnosis of amyotrophic lateral sclerosis (ALS) will unquestionably alter your life in almost every aspect.

You should remember, however, that no one knows exactly how you personally will be affected by the disease or how rapidly it will progress. Statistics can shed some general light on what you can expect from ALS, but they can’t predict the course of ALS from person to person.

Last Updated: 
Sat, 03/13/2010 - 13:34

Research Briefs: FA, MG, MM, MMD1, gene therapy

Edison drugs target FA, mitochondrial diseases

Second Phase 2 Trial of CK-2017357 Under Way

San Francisco biotechnology company Cytokinetics announced June 21, 2011, that it has opened enrollment for a new clinical trial of CK-2017357 at three different dosage levels in people with ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease).

ALS Research Briefs: Ataxin 2 Gene

In a 2010 study, scientists working in the United States and Germany found that small polyglutamine ("polyQ")expansions of DNA in the ataxin 2gene significantly increase the risk for developing ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease).

Expansions of DNA coding for glutamine in the ataxin 2 gene lead to production of expanded ataxin 2 proteins, containing extra strings of glutamine amino acid molecules.

Stem Cell Model Creates 'ALS in a Dish'

A human cellular model of ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease) has been created using cells taken from people with a subtype of the disease called ALS8.

This so-called “disease in a dish” research model already is enabling researchers to learn more about the role of a protein called VAPB in the ALS disease process.

Safety Stem Cell Trial in ALS Set to Advance

Maryland biotherapeutics company Neuralstem has announced favorable results from the first part of a phase 1 trial to test the safety of its experimental spinal cord stem cell treatment in ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease).

Research Briefs: Stem Cells

Stem cells are a hot topic these days in medicine, science and law, although the term has multiple meanings and it's easy to get confused.

In short, stem cells are cells at an early stage of development from which specialized cells, such as muscle or nerve cells, can develop (in other words, from which these specialized cells "stem").

Different kinds of stem cells are referred to as:

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.

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