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Archive for March 2007

North Carolina Man with Spinal Muscular Atrophy Realizes Hockey Dream

Posted: March 31st, 2007 | By: Staff | No Comments
Saturday, March 31st, 2007

Still another inspiring story this week, this time from North Carolina in the North Carolina Extension News. Jonathan Greeson of Pikeville in Wayne County always dreamed of playing hockey. Mr. Greeson has spinal muscular atrophy and is confined to a wheelchair, but he decided not to let that stop him. In 2002, Mr. Greeson founded the Carolina Fury under the umbrella of N.C. Electric Hockey Wheelchair Association.

At the time, three players from Jacksonville, Burlington and Raleigh – where Greeson lived as a student – practiced in Cary. Today, the Carolina Fury has eight regular players from across the state. The sport is competitive, Greeson says, with rules that are similar to regulation hockey.

The team does not play on ice. Their home court is the gymnasium of Charles B. Aycock High School in Pikeville, Greeson’s high school alma mater, and their main opponents are able-bodied players who take on the Fury from wheelchairs. Though the opposing teams always put up a fight, it is usually the Fury that comes out on top.

The Fury has set a goal of competing in the PowerHockey World Championships every two years. In 2004, the team competed in Minneapolis, and in 2006, they competed in the PowerHockey Cup in Calgary, Alberta, Canada. Greeson said the team drove to the competition – about five days on the road.

Greeson acknowledges that participating in PowerHockey requires support. “You have to have a really good family,” he said.

You can read the entire article on the Extension Online News blog.

Fans of the Fury can even buy merchandise. A selection of t-shirts, hats, posters, and other items can be found here. You can even find merchandise specifically with Mr. Greeson’s name and number!

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Categories : Spinal Muscular Atrophy News Stories

NIH/NINDS Director Highlights Remarkable Scientific Advances in SMA Research in Congressional Hearing

Posted: March 29th, 2007 | By: Staff | No Comments
Thursday, March 29th, 2007

Some comments on spinal muscular atrophy (SMA) this week from the National Institute of Neurological Disorders and Stroke (NINDS), which is part of the National Institutes of Health (NIH). SMA Foundation excerpted the below remarks made by NINDS Director Story C. Landis, Ph.D. while she was testifying in front of the Senate Subcommittee on Labor-HHS-Education Appropriations hearings this week:

A decade ago, spinal muscular atrophy (SMA) was one of hundreds of poorly understood inherited disorders that affect the nervous system, and the outlook for developing treatments was bleak. The discovery of the gene defect that causes SMA revealed a rational strategy for developing drug therapy. In just a few years, the NINDS SMA Project developed a detailed drug development plan and tested hundreds of new compounds in laboratory tests. Most recently, some of these potential drugs increased the amount of the critical missing protein to normal levels in cultured cells from patients who have SMA. The SMA Project is testing the effectiveness of these compounds in animals with SMA and assessing their safety to bring these potential drugs to clinical trials, offering significant promise for helping people who have SMA.

Research on SMA illustrates the path from gene to understanding to treatment. Researchers have now characterized well over 200 mutations that cause neurological disorders. For inherited ataxias, Batten disease, Down syndrome, Huntington’s disease, muscular dystrophy, Rett Syndrome, neurofibromatosis, and many other previously baffling disorders, researchers have genetically engineered animals that mimic the human disorder and then replaced genes, turned harmful genes off, turned up compensatory genes, or counteracted gene defects with drugs that target the affected cellular functions. In the future, application of these strategies to patients could preempt or even reverse the damage caused by gene defects. NINDS is aggressively pursuing opportunities to translate science advances such as these to treatments.

Read the full text of Dr. Landis’ testimony in PDF format here.

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Categories : Spinal Muscular Atrophy News Stories, Spinal Muscular Atrophy Science and Research

California Woman with Spinal Muscular Atrophy “Inspires By Living”

Posted: March 29th, 2007 | By: Staff | No Comments
Thursday, March 29th, 2007

There was an inspiring article this week in the Victorville (California) Daily Press about a woman who is defying the odds. Reporter Ryan Orr introduces us to Sherry Pierce, a 40-year-old Victorville resident who has spinal muscular atrophy.

Here’s an excerpt from the story:

Some women inspire others by running for office, or giving to charity, or standing in a picket line, or keeping their seat at the front of the bus. Sherri Pierce inspires people by simply getting up and going to work everyday.

Pierce was born with spinal muscular atrophy and has been confined to a wheelchair since she was 3. She remembers when she was very little, being able to stand but only for a short while before her legs would give out. It is a degenerative muscle disease. As time passes, her condition worsens. But that has done nothing to weaken her resolve. She is overwhelmingly positive.

She celebrated her 40th birthday in early February, making her life 36 years longer than doctors had predicted to her parents. Everyday she continues to defy the odds and no longer bothers with doctor’s opinions. In fact, she describes herself as somewhat anti-doctor.

“Doctors don’t always know the power of positive thinking,” she said.

Pierce works as a counselor for students with disabilities at Victor Valley College, where she earned her associate degree in liberal arts. She then got her bachelor’s degree in psychology, and her master’s degree in rehabilitation counseling, both from California State University, San Bernardino.

“She’s such an inspiration, not only to the able-bodied people, she demonstrates to all the people with disabilities — whether they were born with them or acquired them — so much hope,” said Eileen Sullivan, friend and co-worker. “She’s a girlie girl,” said Sullivan.

Pierce has lived in the Victor Valley since 1978. She owns her own home in Hesperia. She can remember when Bear Valley Road was two lanes and actually used to get from one place to another in under an hour. She is unable to drive, because her arms are too weak to turn a steering wheel. That didn’t stop her from going to a special training center and trying. “I’ll try anything,” she said.

Click here to read the rest of the article.

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Categories : Spinal Muscular Atrophy News Stories

Fight SMA Sends Spinal Muscular Atrophy Doctor to ASENT Conference

Posted: March 28th, 2007 | By: Staff | No Comments
Wednesday, March 28th, 2007

On Thursday, March 8, 2007, American Society For Experimental Neurotherapeutics (ASENT) devoted a section of their 9th Annual Meeting to the Fundamentals of Clinical Trials in Neurotherapeutics. Chaired by Wilson Bryan of the FDA and Bernard Ravina of University of Rochester, this day-long session included topics such as trial design, stages of therapeutics development, clinical trial statistics, and ethics of clinical trials.

FightSMA sponsored Dr. Jean Teasley’s attendance of the Fundamentals of Clinical Trials in Neurotherapeutics session. Dr. Teasley is a pediatric neurologist specializing in neuromuscular diseases and operative monitoring for neurosurgical procedures. She serves as Associate Professor in Virginia Commonwealth University’s School of Medicine’s Department of Neurology, Division of Pediatric Neurology and practices at Children’s Hospital in Richmond, Virginia where she treats spinal muscular atrophy patients.

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Categories : Spinal Muscular Atrophy Science and Research

Carol Burnett Spars with Fight SMA Donor “Family Guy”

Posted: March 27th, 2007 | By: Staff | No Comments
Tuesday, March 27th, 2007

Fight SMA Donor If you follow entertainment news, you’ve probably heard by now that Carol Burnett is suing FOX Network and the makers of “Family Guy” for $2 million. The suit stems from a 2005 episode of the cartoon sitcom that lampooned the actress and comedienne. More details are available from this article on CNN.com.

Fight SMA has ties with the show “Family Guy” reaching back to the show’s generous donation to our annual spinal muscular atrophy fundraiser last October. The makers of the TV show actually donated an appearance on the program! They illustrated the highest auction bidder into the show, making them a character in one episode. The winning bid for the once in a lifetime experience was a record $12,500. We remain thankful to FOX and Family Guy for the donation to our fight against SMA.

We are also familiar with Ms. Burnett’s involvement in a number of extremely worthy charitable causes, including her funding of multiple scholarship funds at universities across the country.

Without commenting on the merits of the lawsuit, we hope the two parties can come to an agreement to settle their dispute.

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Categories : Spinal Muscular Atrophy News Stories
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