Survey Open for People with ALS

An online survey about ALS symptoms, now open to people with amyotrophic lateral sclerosis (ALS), is being conducted by the Neurological Clinical Research Institute at Massachusetts General Hospital (MGH) in Boston. The site is one of five in MDA's ALS Clinical Research Network.

Talking Trials

Merit Cudkowicz

Put together the words amyotrophic lateral sclerosis (ALS) and the phrase clinical trials expert, and one name that is sure to follow is Merit Cudkowicz.

ALS Research Briefs: Role of Astrocytes in ALS

Scientists continue to work at uncovering the biological mechanisms underlying amyotrophic lateral sclerosis (ALS). One area of intense study involves the potential role of central nervous system support cells called astrocytes. 

Government Funding for NMD Research Largely Spared in Continuing Resolution

The news is generally favorable for many important government-funded neuromuscular disease research projects, in the wake of Congress’ recent passage of a continuing resolution funding the government through the end of September. 

Most government operations, except those funded through the full-year appropriations bills, will be maintained at essentially the same level as fiscal year (FY) 2012. (The government's fiscal year begins on Oct. 1 and ends on Sept. 30 of the following year.)

MDA and ALSA Urge FDA to Take Action on Groundbreaking ALS Hearing

The Muscular Dystrophy Association and The ALS Association (ALSA) submitted a joint comment to the U.S. Food and Drug Administration (FDA) today, commending and thanking the agency for convening its first-ever ALS public hearing on Feb.

ALS Research Briefs: Rasagiline and NurOwn

The latest advances in brain and central nervous system research were discussed at the 65th annual meeting of the American Academy of Neurology, held in San Diego, March 16-23, 2013.

An ALS Biomarker? Brain Imaging Technique Pinpoints ALS, Disability

Advances in technology have led to greater sensitivity in imaging techniques, increasing scientists' ability to see into the brain and spinal cord. Now, a research team reports that a technique called magnetic resonance spectroscopic imaging (MRSI) can distinguish people with amyotrophic lateral sclerosis (ALS)  from people without the disease.

ALS Risk Lower in American Indians, Alaska Natives

The number of new cases of amyotrophic lateral sclerosis (ALS) identified each year (incidence) and the number of people living with the disease (prevalence) appears to be lower in American Indians and Alaska Natives than in white populations.

Further studies are needed to determine the reason for these differences, but researchers suggest that nonwhite populations may have different genetic or environmental risks for ALS.

New Guidelines on Genetic Testing in Children

As scientists learn more about what our DNA can tell us about health and disease, public interest has intensified and genetic testing has become increasingly common. In response, the American Academy of Pediatrics (AAP) and the American College of Medical Genetics and Genomics (ACMG) have released new guidelines to address updated technologies and new uses of genetic testing and screening in children.

Arimoclomol Slows Disease Progression in SBMA Mice

Mice with a disorder mimicking human spinal-bulbar muscular atrophy(SBMA, or Kennedy disease) that were treated with an experimental therapy called arimoclomol showed improved nerve-cell survival, increased body weight, and better muscle strength and function than mice that didn't receive the treatment.

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