2007 July | Spinal Muscular Atrophy

Archive for July 2007 – Page 2

Fighting Back via Multimedia (Podcast Episode 7)

Posted: July 10th, 2007 | By: Staff | No Comments

Tuesday, July 10th, 2007

fighting-back-ep7-070710.mp3
There are a number of ways to fight a serious or incurable disease. Kelly Harmsen found a rather creative and very effective technique. Her son has amblyopia, or lazy eye, a disorder that requires him to wear an eye patch for several hours every day. If his condition is not treated properly, he could lose the sight in the affected eye. The problem is, for a time he refused to wear the patch. Kelly turned to the multimedia world for a solution, creating a puppet show on DVD that would not only entertain her son but also teach him why it’s important to wear his patch.

In episode 7 of Fighting Back, a podcast produced by Fight SMA and FighterMom that tells inspirational stories about people and families fighting serious diseases, we talk to Kelly and hear how she came to create her company, Bjort & Company, Inc., and DVD, The Eye Patch Kids.

More information on Amblyopia is available from Prevent Blindness America.

To hear Episode 7 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 or leave us a voice mail message at our new voicemail hotline number – 206-222-1903. You can also leave a message in the form of a comment on this blog as well.

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Categories : Podcasts

Nevada Girl with SMA Gets Miniature Dream Home

Posted: July 8th, 2007 | By: Staff | No Comments

Sunday, July 8th, 2007

Make-a-wish Foundation is making the wish of a Nevada girl with SMA come true. The Reno Gazette-Journal recently published a story about seven-year-old Satori Lewis and her wish to have a playhouse big enough that she could drive her electric wheelchair inside and move around. With the help of 20 businesses in her Dayton, NV hometown, that wish will be fulfilled this week.

Here’s an excerpt from the story:

Satori said she is excited for the playhouse to arrive and has a special spot under a large cottonwood tree selected in her family’s backyard.

The area will have a secret backyard garden and a special ambience with a steel dragon that her grandmother gave her to guard over the very special play place.

She said she plans to invite some of her friends over for a house-warming party after the playhouse is set up. Satori decided on a beading party for the first entertaining she will do in her new playhouse.

She said she chose white for the inside walls to display her artwork.

“Of course there will be a book shelf and drafting table and maybe curtains,” Satori said.

You can read the entire story at the Gazette-Journal website.

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Categories : Spinal Muscular Atrophy News Stories

Spinal Muscular Atrophy Drug Development Announced

Posted: July 3rd, 2007 | By: Staff | No Comments

Tuesday, July 3rd, 2007

Families of SMA announced recently the selection of a clinical candidate for spinal muscular atrophy through its program being conducted at deCODE chemistry. The lead compounds have shown the ability to extend survival in a mouse model of SMA.

For more information on this announcement, you can read the news release from FSMA.

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Categories : Spinal Muscular Atrophy Science and Research