The 2009 Fight SMA Annual Conference featured a number of firsts, including the first-ever webcast of the event. Now, the video from that webcast is available for online viewing and download! You can watch it on the Conference 2009 page here at Fight SMA. Just follow this link:
Fight SMA Annual Conference 2009
Tags: conference 2009, sma, spinal muscular atrophy
Thank you to our attendees, corporate sponsors, Thriving with SMA panelists, and photographer Ralph Alswang.
Richmonders should pay a little closer attention than usual to commercial breaks on WWBT-TV (NBC 12) in the coming weeks. That’s because Fight SMA will be featured in a 30-second spot on that station that will air throughout December. The spot is part of a partnership between Mondial Assistance and WWBT. The “World of Good” promotion honors people in the community who do a world of good for others. Fight SMA President Martha Slay was chosen as one of these people.
We’re very proud of this honor, and very grateful to Mondial Assistance and WWBT for giving us this opportunity to spread the word about Fight SMA!
You can watch the commercial below:
Here is a list of the air dates and times on WWBT-TV, NBC12:
12/13/08: 12 News on Saturday 9-10am (2x)
12/16/08: 12 News at Noon 12-12:30pm
12/16/08: News at 5:30pm
12/17/08: 12 News at Sunrise 5am-5:30am
12/17/08: 12 News at Noon 12-12:30pm
12/18/08: 12 News Today 6-7am
12/18/08: Dr. Phil 3-4pm
12/22/08: Dr. Phil 3-4pm
12/22/08: 12 News at 6pm-7pm
12/23/08: 12 News at 4pm-4:30pm
12/26/08: 12 News at 4pm-4:30pm
We were alerted today about a video on YouTube about a remarkable young man. George Cornelius is a University of Southern California film student, and according to his friends and professors he is producing outstanding work. He also happens to have SMA. The story in the video below was produced by the PBS program Across Indiana.
Tags: sma videos, spinal muscular atrophy
Bill and Victoria Strong, the couple behind the Petition to Cure SMA, posted a video on the Fight SMA Facebook Group. It’s so good it just had to be shared here as well. If you haven’t joined the Facebook group, head on over and network with us! If you haven’t signed the petition, please make your voice heard!
Tags: petition to cure sma, spinal muscular atrophy
A big thanks to Rozie McClay for posting the long version of the Invisible Heroes video in the “submit your news” section of the KOMO-TV website. Here’s a link to see it yourself. We encourage you to spread our videos anywhere you find an appropriate place!
Tags: sma videos, spinal muscular atrophy
ABC News talked about a new SMA test earlier this month in an interview with Dr. Laurie Demmer from Tufts Medical Center. The test is designed to be given to potential parents before pregnancy occurs.
To view the video in a popup, click here.
Note: An advertisement plays before the ABC News video starts.
Tag: spinal muscular atrophy testing
Not only was yesterday Mother’s Day, it’s also the time of year when most colleges are holding their graduation ceremonies. A story on the front page of the Chicago Tribune story yesterday celebrated both. Lucy Trevino, who has Spinal Muscular Atrophy Type 3 and is confined to a wheelchair, graduated this past weekend with an engineering degree. Her mother, Rosa, helped make it possible, by being right there with her in class, to assist with all of the things that SMA wouldn’t allow Lucy to do…
For the six years it took to get through one of the most rigorous programs in the College of Engineering, it was Rosa—a tad shy and always thinking two steps ahead—who got her daughter to every class, lab and study session. She knew which text and notebook to lay on Lucy’s desk. And she turned the pages when a heavy book tired Lucy’s hands.
For two or three hours, as Lucy absorbed lectures in calculus or thermodynamics or circuit analysis, Rosa sat not far away, just in case Lucy needed a sip of water or began choking.
To read the entire wonderful story, please visit the Chicago Tribune website. A video of Lucy and Rosa is also available on that page.
Tags: college graduation, SMA Type III, university of illinois
Fight SMA’s chapter in New Mexico, Fight SMA Southwest / Desiree’s Buddies, has been quite busy over the past year. Last spring, the chapter’s president negotiated a deal for SMA billboards in Albuquerque, in the fall Desiree’s Buddies organized its first charity golf tournament, and they’re now organizing the second Spinal Muscular Atrophy Golf Classic. Now, the chapter has released its own YouTube video. Take a look!
Tag: desirees buddies
The below video has been posted on this blog before, but we noticed the other day that it’s had quite a number of views and comments on YouTube. That’s why we thought we would post it on the Spinal Muscular Atrophy Blog again, for those who haven’t yet seen it. It’s a fabulous video, created by Jim Vaile. It was shown in April, at the 2007 Fight SMA Spinal Muscular Atrophy Conference in Washington, DC. It features images of the children of Fight SMA, the reason for our fight. Watch the video and, if you can, post a comment by clicking on the video and visiting the YouTube site. The more “views” counted by YouTube, the higher the chances that the video will maintain a prominent position.
Enjoy!
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