2007 January | Spinal Muscular Atrophy

Archive for January 2007

News Release: Fight SMA Announces Winners of Charity Golf Classic

Posted: January 31st, 2007 | By: Staff | No Comments

Wednesday, January 31st, 2007

Media Contact:
Steve Mullen
EndGame Public Relations for Fight SMA

Richmond, Virginia (January 31, 2007) – Fight SMA, a Richmond, Virginia-based international organization devoted to finding a treatment or cure for spinal muscular atrophy (SMA), today announced the winners of the 8th Annual Hannah’s Buddies Charity Classic. The golf tournament was held on January 20, 2007 at the Grand Cyprus golf course in Orlando, Florida, and was organized by Hannah’s Buddies, the Tampa, Florida chapter of Fight SMA.This year’s winning foursome was made up of David Veghte, Richard Veghte, John Veghte, and Larry Hill.

After a day on the links, golfers and non-golfers alike headed to the House of Blues for an auction and dinner. They were also treated to a concert hosted by John Bell, lead singer of the band Widespread Panic. Mr. Bell is the godfather of Hannah Elliott, for whom Hannah’s Buddies is named. Featured at the concert were Michael Nichol and Sam Holt, as well as the bands Col. Bruce Hampton & The Aquarium Rescue Unit and Outformation.

“I’d like to thank everyone who helped make this event a great one,” said Duncan Elliott, who started the Fight SMA chapter with his wife, Laurie, and daughter, Hannah.

All money raised at the event will go toward research for a treatment or cure for SMA.

“This is a wonderful fundraiser that is made possible by a very dedicated chapter of our organization,” said Fight SMA President Martha Slay. “We’re extremely grateful to those who organized it, and everyone who participated.”

Approximately seven million people carry the SMA gene, unknowingly.

About Fight SMA
Headquartered in Richmond, VA, Fight SMA (also known as Andrew’s Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. For more information on spinal muscular atrophy and Fight SMA, please visit www.fightsma.org.

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Categories : FightSMA News, Spinal Muscular Atrophy Events

Popular Nutritional Supplement May Help People With Muscular Dystrophies

Posted: January 31st, 2007 | By: Staff | No Comments

Wednesday, January 31st, 2007

According to a recent review performed by researchers from the The Cochrane Collaboration shows that creatine, a nutritional supplement popular amongst athletes may help muscular dystrophy patients increase muscle strength. Researchers reviewed 12 studies that included 266 muscular dystrophy patients (with multiple forms of the disease). The reviews indicates that subjects who took creatine showed an increase in both muscle strength and lean muscle mass over the patients who did not take the supplement.

Click here to read the full article

Creatine is normally found in the human body because muscle cells use it to produce energy. In fact, checking the levels of “creatine kinase” (also known as “CPK”) is one test that doctors use to distinguish between muscular dystrophy and spinal muscular atrophy when making a diagnosis. Most children with muscular dystrophy have very high CPK levels, where as children with SMA have normal or only slightly elevated CPK levels.

Click here for more information about how SMA is diagnosed

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Categories : Spinal Muscular Atrophy Science and Research

New collaboration could help fight neuromuscular diseases

Posted: January 29th, 2007 | By: Staff | No Comments

Monday, January 29th, 2007

Long-time rivals, the Mayo and the University of Minnesota, have come together to advance the state of Minnesota “as a leader in biotechnology and medical genomics.” The new partnership, naturally called the “Minnesota Partnership for Biotechnology and Medical Genomics,” aims to fund research and drug development for a broad range of conditions, from heart disease and cancer, to transplant rejection and drug addiction. But, also the partnership includes neuromuscular diseases (of which spinal muscular atrophy is) amongst its targets.

Click here to read more about the new partnership

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Categories : Spinal Muscular Atrophy Science and Research

Modulating role of RNA structure in alternative splicing of a critical exon in the spinal muscular atrophy genes

Posted: January 26th, 2007 | By: Staff | No Comments

Friday, January 26th, 2007

By Natalia N. Singh, PhD, Ravindra N. Singh, PhD, and Elliot J. Androphy, MD

From the Abstract: “Humans have two nearly identical copies of the survival motor neuron (SMN) gene, SMN1 and SMN2. Homozygous loss of SMN1 causes spinal muscular atrophy (SMA). SMN2 is unable to prevent the disease….Findings reveal for the first time the critical role of RNA structure in regulation of alternative splicing of human SMN.”

Click here to read the entire paper

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Categories : Spinal Muscular Atrophy Science and Research

8th Annual Hannah’s Buddies Charity Classic another huge success

Posted: January 23rd, 2007 | By: Staff | No Comments

Tuesday, January 23rd, 2007

The 8th Annual Hannah’s Buddies Charity Classic was another huge success on January 20. More than 230 golfers hit the Grand Cypress courses bright and early Saturday morning to the nicest weather in the event’s history. Scores were low and spirits were high. Then it was off to the House of Blues for the auction and dinner – lots of cool stuff and lots of money raised for Spinal Muscular Atrophy (SMA) Research. The crowd rolled in for the evening of music with Michael Nichol, JB and Sam Holt, Outformation and Col. Bruce Hampton and the Aquarium Rescue Unit. It was a great day…it was a great night. Thanks to everyone who participated onsite and from afar. And, congrats to this year’s winning team of David Veghte, Richard Veghte, John Veghte, and Larry Hill!Thank you for the continued support!

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Categories : Spinal Muscular Atrophy Events