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Archive for January 2008

Researchers Identify Gene for Rare Form of Spinal Muscular Atrophy

Posted: January 23rd, 2008 | By: Staff | No Comments
Wednesday, January 23rd, 2008

Researchers at the Neurogenetics Laboratory at the University of Miami (Fla.) announced earlier this month that they’ve identified the gene responsible for a rare X-chromosome-linked form of spinal muscular atrophy.

Led by Dr. Lisa Baumbach-Reardon and supported by the Muscular Dystrophy Association (MDA), the research team found that flaws in the UBE1 gene cause the X-chromosome form of the disease, which affects male babies and occurs in a small percentage of SMA cases. Its exact incidence is unknown.

To learn more, read the news release on the MDA website.

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Categories : Spinal Muscular Atrophy Science and Research

Fighting Spinal Muscular Atrophy with a Song

Posted: January 15th, 2008 | By: Staff | No Comments
Tuesday, January 15th, 2008

Gail Hatchard probably didn’t expect to have a hit song on her hands, but at least in one part of Canada … she does. A story this week in the Chronicle Herald of Nova Scotia tells of how Ms. Hatchard penned a poem one night about her granddaughter, Katie, who has spinal muscular atrophy. She took it to her friend, Janice Sheridan, who put it to music. Ms. Sheridan later took the song to a recording studio … and the rest is history.

Ms. Sheridan put the words to music and the song was recorded at the Riverview Digital Recording Studio in Bear River, with studio owner Blair Cromwell on guitar.

The first 500 CDs sold quickly and only 175 remain of the second batch of 500.

If they continue to sell well, a corporate sponsor will be sought for the next batch. Fifty were also shipped and sold in Ontario. All proceeds go toward research for finding a cure for the disease.

“I’m very pleased,” Mrs. Hatchard said about the poem. “It’s gone beyond my wildest expectations. I had no idea it would be so well-received.”

She added, “It’s amazing to me that those simple little words went so far.”

Mrs. Hatchard said the money isn’t much compared to the millions required to find a cure.

“But it’s our little part.”

Visit the Chronicle Herald website to read the entire story, and learn how you can order your own copy of the CD.

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Categories : Spinal Muscular Atrophy News Stories

Fighting Back Podcast #11 – Researchers Look Back at 2007 and Forward to 2008

Posted: January 11th, 2008 | By: Staff | No Comments
Friday, January 11th, 2008

fighting-back-ep11-080111.mp3
The year 2007 was an exciting time for a number of reasons, and 2008 looks to be just as eventful. In this new episode of Fighting Back Podcast, we talk with two disease researchers! Dr. Alex MacKenzie is Director of the Research Institute at Children’s Hospital in Ontario. Chris Lorson conducts his research at the University of Missouri in Columbia and is also Fight SMA’s Science Director.

To hear Episode 11 of Fighting Back, you have several options. You can listen using the Flash mp3 player above. Or, if you’re a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If you’re an iTunes user you can subscribe and download via our iTunes store. Finally, you can, of course, download this episode using the link above.

If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the Fight SMA contact page. You can also leave a message in the form of a comment on this blog as well.

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Categories : Podcasts

New Episode of Fighting Back Podcast Coming Tomorrow

Posted: January 10th, 2008 | By: Staff | No Comments
Thursday, January 10th, 2008

After a long hiatus, Fighting Back Podcast is coming back! A new episode of the podcast, produced for Fight SMA and FighterMom, will be published on this blog tomorrow morning. Episode 11 of Fighting Back will feature interviews with disease researchers Dr. Chris Lorson and Dr. Alex MacKenzie. The doctors will talk look back at advances in SMA and other disease research in 2007. They’ll also talk about what could happen in 2008. Don’t miss it!

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Categories : General Information, Podcasts

Underage Drivers: Could robotic vehicles help SMA children?

Posted: January 4th, 2008 | By: Staff | No Comments
Friday, January 4th, 2008

Researchers at the University of Delaware are working to develop robotic vehicles that they believe could help young disabled children by allowing them to explore their environment. According to Cole Galloway, a physical therapy professor, this mobility is important to a child’s development because “as soon as you’re reaching, as soon as you’re walking, your cognition explodes.” This suggests that many disabled children may be missing out developmentally because they often are not given a power-chair or other powered mobility option until the age of 3 or later.

Speaking from experience, Ruth Everard of Cambridge, England expressed her support of the Delaware researchers. Ruth has type 2 spinal muscular atrophy (SMA) and was less than 2 years old when her father designed a power chair for her that lead to the creation of Dragonmobility Ltd, which now produces multiple kinds of power chairs for individuals of differing ages and abilities. Ruth hopes that the work in Delaware will add to the “existing body of knowledge about mobility and the developmental needs of children.” She said, “I find it tiring that I’m still being told it’s cutting edge, and I’m 28.”

To read the full article, click here.

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Categories : Spinal Muscular Atrophy Families and Friends, Spinal Muscular Atrophy News Stories
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