Five Strategies for Treating Neuromuscular Disease

July 14, 2011

Five Strategies for Treating Neuromuscular Disease

Quest (MDA) | July 2011 | By Amy Labbe

Article Highlights:

  • This article describes five leading therapeutic strategies currently being tried in neuromuscular disease research: antisense oligonucleotides, stem cells, small molecules, protein therapy and gene therapy.
  • These strategies are relevant in ALS, Becker MD, centronuclear myopathies/myotubular myopathy, Charcot-Marie-Tooth disease, congenital MD, Dejerine-Sottas disease, distal MD (Miyoshi myopathy), Duchenne MD, facioscapulohumeral MD, Friedreich’s ataxia, limb-girdle MD, myotonic MD and spinal muscular atrophy.
  • The strategies were the focus of an MDA scientific conference in March 2011 that was designed to help advance these strategies from “microscope to marketplace.”
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Local Mom Angry After Special-Needs Camp Sends Son Home

June 15, 2011

Local Mom Angry After Special-Needs Camp Sends Son Home

nbc4i.com | June 14, 2011 | By Candace Lee

REYNOLDSBURG, Ohio — Every four hours 13 year old Trevor Robinett endures at least three treatments to clear his throat and airway of phlegm. Diagnosed at the age of two with Spinal Muscular Atrophy, Trevor is often stuck at home being homeschooled. The only time he interacts with friends is when he play online video games.

However, one a year Trevor goes to camp. He’s been attending the Muscular Dystrophy Association’s week long residential camp since he was 5. Mom Michelle dropped him off Sunday, but hours later got a call from MDA camp staff to come and get her son.

“They told me that didn’t have the resources to take care of him. They said the nurse is uncomfortable with taking care of his needs,” said Michelle Robinett.

Trevor’s mom says his treatments for spinal muscular atrophy have not changed and is shocked her son was sent home early from a camp he looks forward to every year. She offered to send a home health aide, private nurse and herself as long as Trevor could stay.

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‘Prisoners’ raise funds for MDA

May 26, 2011

‘Prisoners’ raise funds for MDA

BGDailyNews.com | May 26, 2011 | By Pam Cassady

About 200 people were arrested and taken to jail in Bowling Green on Wednesday, but all were back on the streets by late afternoon. The arrestees were even treated to a meal and thanked for their visit during their incarceration.

Of course, this wasn’t an ordinary jail and the prisoners were far from criminals. Instead, area business and community leaders willing to help out a good cause went behind bars Wednesday to benefit the Muscular Dystrophy Association.

During the MDA lockup, the “jailbirds” were arrested and brought to the L&N Depot, where they were booked and “sentenced to raising money,” said Amanda Spiehler, executive director MDA of Middle Tennessee and Southern Kentucky.

“I’m being falsely accused,” joked Robert Dean, chief of police at Western Kentucky University, as he sat with other arrestees making calls to get donations. Dean then admitted that he knew he was going to be arrested that day.

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To “Walk a Mile” in Her Wheelchair

April 30, 2011

To “Walk a Mile” in Her Wheelchair

KTVA (CBS) | April 29, 2011 | By Grace Jang

Vodpod videos no longer available.

Thousands of children in the United States suffer from muscular dystrophy and the experience can sometimes alienate them from their peers.

However, one Anchorage school set about trying to bridge that gap with a unique project.

Fitting in is one of the most important things for a sixth grader but it can be hard when you’re a sixth grader who gets around in a wheelchair.

When Krista Stapleford was three years old she was diagnosed with spinal muscular atrophy, which impacts her ability to use all of the muscles in her body, particularly her legs.

So in order to get around, 12-year-old Krista relies on a wheelchair, but that means she stands out and not necessarily in a good way.

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My Voice: Lisa Evans

April 20, 2011

My Voice: Lisa Evans

Melbourne Weekly | April 19, 2011 | By Lisa Evan

Lisa Evans, 41, will embark on a two-week trek in France later this year in honour of her 12-year-old son Jack, who has a degenerative neuromuscular disease.

Jack was diagnosed with spinal muscular atrophy when he was eight months old and we were told not to expect him to live past two. He suffers from a genetic disease which, in short, affects the motor neurons in his spine and causes his muscles to waste away. As a result, Jack is unable to sit, crawl or walk. He cannot swallow, so he is fed through a tube and he’s also susceptible to recurrent chest infections. He relies on a ventilator to breathe at night and always has a suction machine with him to clear secretions. Jack spends his life in an electric wheelchair.

The condition occurs in one in 10,000 live births and is the greatest genetic killer of kids under the age of two.

I’m taking part in the seventh ChallengeMD! in Mt Blanc, France, to raise more than $250,000 for the Muscular Dystrophy Association. There’s 17 Aussies participating in the 14-day trek, from June 24 to July 8, which circumnavigates Mt Blanc through France, Italy and Switzerland.

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Jenny named ambassador

April 9, 2011

Jenny named ambassador

Canada East | April 9, 2011 | By Carole Gignac

CAMPBELLTON – It takes 16 muscles to hop on one foot – and plenty more to smile like Jenny Larocque, the 2011 Hop for Muscular Dystrophy ambassador for the province.

Jenny is a Grade 1 student at Lord Beaverbrook School and the fact that she has spinal muscular atrophy does not slow her down. Jenny likes to watch the TV sitcom iCarly, play on the Wii, and she loves to play with her big brother, Shane, and her best friend, Selena. She also enjoys camping. Jenny recently joined Brownies and she is very excited about that.

On April 21, Lord Beaverbrook Elementary School will be hosting a HOP for Muscular Dystrophy event for the students. The HOP for Muscular Dystrophy is a national educational fundraising initiative. At the HOP event, children can hop, dance or move – according to their own ability – to music. Funds raised support the tens of thousands of Canadians affected by a neuromuscular disorder through research for a cure, education and services.

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Social Networking and Disability

April 6, 2011

Social Networking and Disability

Quest | March 31, 2011 | By Michael P. Murphy

When I graduated from high school in 1984, there were no tearful farewells to friends and girlfriends while a New Wave soundtrack played in the background like some John Hughes movie.

Frankly, I was relieved to be free to start my writing career, and hopefully be heralded as the next William Gibson. When my science fiction failed to sell, I switched to writing thrillers and, consequently, hoped to be called the next Frederick Forsyth. I’ve been so busy trying to break into the literary (or pulp) world that I’ve never spent much time poring over scrapbooks.

Now that I’m in my 40s, and finding it increasingly difficult to relate to everything from popular music to slang, I wonder whatever happened to the people with whom I’d swap cassettes (that’s how we listened to music in the pre-download days), trade comic books, gripe about school, and gather at my house for weekend-long Dungeons & Dragons sessions.

Like many with disabilities, travel is pretty much impossible for me, so I’ve never attended any class reunions. However, I’ve been able to overcome feelings of isolation through the use of modern technology. In this case, I’m talking about social networking.

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