Spinal Muscular Atrophy (SMA)

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.

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.

Deshae Lott Scholarships Awarded

Three accomplished scholars determinedly pursuing their educations while living with neuromuscular disease are the first winners of the CMMS Deshae Lott Ministries outreach program scholarships.

“We were so impressed,” with the winning candidates, said Deshae Lott, 39, a teacher and minster from Bossier City, La., who founded the nonprofit that bears her name. “These three show great strength of mind and character. Each of them strives to maximize within their limitations.”

Research Briefs: ALS, CMD, FA and SMA

Amyotrophic lateral sclerosis (ALS)

US Team Wins PowerHockey Cup

It didn’t look good for the Minnesota Saints.

Playing against the tough Michigan Mustangs for the top prize in power wheelchair hockey, the Saints went up 4-2, only to see the score tied 4-4 with just five minutes to go.

That’s when forward Chad Wilson, 21, of Chanhassen, Minn., went into overdrive. Wilson, who has Becker muscular dystrophy (BMD), took less than two minutes to score two more goals for the Saints.

Research Briefs: ALS, BMD, DMD, MMD, SMA, Muscle Regeneration

Amytrophic lateral sclerosis (ALS)

MDA Awards More Than $14 Million in Research Grants

MDA has awarded 38 new research grants totaling more than $14 million and covering more than a dozen neuromuscular diseases. 

MDA's Board of Directors met in Los Angeles July 16, where it reviewed and approved the new grants based on recommendations from the MDA Scientific and Medical Advisory Committees. Grants were scored and recommended for approval based on the capabilities of the applicant, the scientific merit of the project, and the proposal's relevance to developing treatments for the disease. The effective start date for all grants was July 1, 2010.

August is SMA Awareness Month

August is National Spinal Muscular Atrophy Awareness Month, and research in this disease has never been more promising.

Major themes in spinal muscular atrophy (SMA) research include increasing cellular production of the needed SMN protein; inserting new genes for the needed SMN protein; stabilizing shorter SMN protein molecules produced by people with SMA; and strengthening the nerve-muscle connections (neuromuscular junctions) that are weakened in this disease.

Here are some recent news stories about SMA from the MDA website.

Nonwalkers With SMA At High Risk for Weight Gain

Children and adults with types 2 and 3 spinal muscular atrophy (SMA) who are no longer walking have an increased risk of being overnourished and overweight if they otherwise have relatively good motor function, a multicenter study shows.

The results emphasize the importance of a "dedicated and experienced nutritionist" in SMA medical management, the researchers say.

About the study

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