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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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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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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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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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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When questioned following her prepared testimony before the Senate, Director of the National Institute of Neurological Disorders and Stroke (NINDS), Story Landis expressed her opinion regarding the current federal policy on embryonic stem cell research. Dr. Landis said, “we are missing out on possible breakthroughs,” and added that “science works best when scientists can pursue all avenues of research.”

Click here to read the full article

Dr. Story Landis received her Ph.D. from Harvard University and served on the faculty of Harvard Medical School and Case Western Reserve University School of Medicine. Dr. Landis joined the NINDS in 1995 and became the Director in September of 2003. NINDS established the SMA Project with the goal to “to enable the development of therapeutic candidates for the treatment of SMA.”

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The Muscular Dystrophy Association (MDA), a funder of SMA research, has joined with France’s The Association Française contre les Myopathies (AFM), the U.S.’s Parent Project Muscular Dystrophy (PPMD), and the Netherland’s United Parent Project Muscular Dystrophy (UPPMD) to form Duchenne Research Collaborative International (DRCI).

According to the press release, in creating this coalition, these four groups “have made a commitment to cooperate, collaborate and communicate openly in support of projects to accelerate translational research into therapeutic options to treat DMD.” Also, the new DRCI has “a broader vision to serve as a model for collaboration in the battle against neuromuscular diseases by improving access to information about rare conditions, creating strong public/private partnerships and, ultimately, increasing the amount of funding available for disease research.”

Click here to read the full press release.

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As part of their “First 100 Hours Agenda,” Democrats in the U.S. House of Representative proposed a bill that would allow federal funding of embryonic stem cell research. The bill passed in the House with a vote of 253 to 174 which is less than the two-thirds majority that will be needed to overturn the veto that President Bush promises. First identified in 1981, stem cell research has been the source of much debate. To help make sense of the recent action in Congress, National Public Radio has compiled a condensed timeline of milestones in this debate, including scientific and legislative highlights.

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Children’s Hospital of Eastern Ontario (CHEO) and Illumina, Inc. have announced a collaboration to develop molecular diagnostic tests to screen newborn babies for spinal muscular atrophy (SMA). Under the terms of the research agreement, Illumina and CHEO will initially develop assays to screen newborns for SMA utilizing Illumina’s technology.

Dr. Alex MacKenzie, CHEO’s Vice President of Research and co-chair of FightSMA’s Scientific Advisory Board, said “The era of DNA-based newborn screening is beginning, and we look forward to working with Illumina to expedite this transition, tapping the potential of their powerful technologies.”

President and Chief Executive Officer of Illumina, Jay Flatley said, “Our research collaboration with the Children’s Hospital of Eastern Ontario has the potential to expand the screening of newborns so that dangerous inherited diseases can be diagnosed, and one day may be treated before causing permanent harm.”

Click here to read the full article

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Did you know that you can help raise money for SMA reasearch with your everyday web-searches? GoodSearch allows you to do just that. All you need to do is designate FightSMA (listed in their charity database as “Fight SMA - Andrews Buddies Corporation“) as your charity of choice and then use GoodSearch as your internet search engine. With each use of GoodSearch, you earn approximately $0.01 for FightSMA. That may not sound like much, consider this: if we could gather just 100 people who each performed 5 searches a day in 2007, we could raise over $1,800 before the end of the year that FightSMA can use to fund researchers working to treat and cure SMA.

Tell your friends!

For more information about how GoodSearch works, visit www.GoodSearch.com.

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