Quest Magazine

'New and Important Player' Advances Understanding of ALS

A population of stem cells called NG2+ cells — which mature into central nervous system support cells called oligodendrocytes — exhibit significant developmental differences in healthy mice compared to mice with a disease resembling human ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease).

What's a 'Meaningful' Change for Those with ALS?

What's a meaningful change for someone with amyotrophic lateral sclerosis (ALS) or his or her caregiver? A new, MDA-supported study seeks to answer that question.

It's believed that physical or psychosocial changes associated with a new treatment that may be "statistically significant" when clinical trial results are analyzed may not be the same as changes that people with ALS and their caregivers consider meaningful.

‘Simple Pleasures’ Essay by Writer with ALS Published in NYT

Neil Selinger, 57, of Larchmont, N.Y., was a high-powered attorney working on high-profile, high-dollar cases when he decided to set it all aside in 2007 to pursue volunteering and writing. 

In 2009, his life underwent yet another change when he received a diagnosis of ALS. The disease hasn’t stopped Selinger’s writing, but it has added a new slant to his point of view.

Young Author with CMT Pens Tale of High-Flying Goose

Ruthie B. Goose is by no means your average goose.

Ruthie has very high expectations of herself — specifically to fly higher than any other bird has flown before.

Ruthie’s resolution and her efforts to fly to 37,901 feet are the subject of a book written by a 10-year-old girl and her father, both of whom have Charcot-Marie-Tooth disease (CMT).

Does Spirituality Influence Acceptance of Disability?

With approximately 54 million Americans living with disabilities, exploring and understanding factors that might facilitate or hinder acceptance of one’s disability may be an important area of research.

But what exactly is the relationship between religious/spiritual attitudes and acceptance or lack of acceptance of disability for people with neuromuscular disorders?

Does Spirituality Influence Acceptance of Disability?

With approximately 54 million Americans living with disabilities, exploring and understanding factors that might facilitate or hinder acceptance of one’s disability may be an important area of research.

But what exactly is the relationship between religious/spiritual attitudes and acceptance or lack of acceptance of disability for people with neuromuscular disorders?

Survey Examines Reproductive Choices in Families with SMA

Parents of children with spinal muscular atrophy (SMA), a genetic disease of the nervous system that shows variable severity, make different decisions about whether or not to have more children.

Katelyn Hanson, a genetic counseling student at Indiana University School of Medicine, and Virginia Thurston, clinical associate professor of medical and molecular genetics at the same institution, are conducting a study to find out more about the factors that influence decisions made by parents of SMA-affected children.

NIH Convenes Meeting on SMA Treatment Development

In a sign of the significant progress being made in spinal muscular atrophy (SMA) research, the National Institutes of Health (NIH) convened a meeting in October that examined the status of laboratory research, clinical trials and strategies for drug development in this disease, with an eye toward speeding the process.

Emotional Expression Medication Approved for Use in ALS

The U.S. Food and Drug Administration (FDA) has approved Nuedexta for "pseudobulbar affect" (PBA), a neurologic condition that sometimes occurs in people with amyotrophic lateral sclerosis (ALS) and involves episodes of involuntary emotional expression out of proportion to or distinct from the person's actual emotional state. The approval was announced by Nuedexta's developer, Avanir Pharmaceuticals, Oct. 29, 2010.

Power Soccer Champ with SMA Excels on Multiple Fronts

Ben Carpenter, a young man with many talents.

Don’t be surprised if, in a few years, you hear about some fascinating new amusement park rides. And don’t be surprised if a young man named Ben Carpenter proves to be the genius behind the design of those rides.

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