2008 April | Spinal Muscular Atrophy

Archive for April 2008 – Page 2

Fight SMA Southwest YouTube Video

Posted: April 9th, 2008 | By: Staff | No Comments

Wednesday, April 9th, 2008

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!

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Categories : Spinal Muscular Atrophy Videos

Fighting Back Podcast #12 – A “Fighter Aunt” Battles Progeria

Posted: April 1st, 2008 | By: Staff | No Comments

Tuesday, April 1st, 2008

fighting-back-ep12-080401.mp3
Fighting Back Podcast … is back! This quarterly program provides information for and inspirational stories about people and families fighting against serious or incurable diseases or conditions. It’s produced by Fight SMA and FighterMom.

In this episode, host Steve Mullen talks with Audrey Gordon, President and Executive Director of the Progeria Research Foundation. Audrey and her sister, Dr. Leslie Gordon, founded PRF after Leslie’s son was diagnosed with the disease. Progeria is a disease that many have heard of, even if they don’t know its official name. It causes rapid aging in children, eventually leading to premature death. In Fighting Back Podcast Episode 12, Audrey tells us more about the disease, as well as how and why she’s fighting it.

Also in this episode of Fighting Back Podcast, we have information about the upcoming FighterMom Friday!

To listen to Fighting Back Podcast, you have several options. You can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.

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.

Thanks for listening!

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Categories : Podcasts

SMA does not stop this teen’s moves

Posted: April 1st, 2008 | By: Staff | No Comments

Tuesday, April 1st, 2008

Diagnosed with type 2 spinal muscular atrophy (SMA), Ofek Cohen is used to being limited by his physical condition. “I’m not able to do much on my own,” Ofek says. “I’m very weak. I can’t walk or write or pick things up. I need help doing everything.”

But he doesn’t let this stop him. At 16 years old, Ofek is a junior in high school, a member of the National Honor Society, and a chess champion. Although Ofek is unable to move the chess pieces himself and must rely on his opponent for help, he has won his county’s chess tournament for the second year in a row. Bill Wardle, the tournament sponsor, says “Ofek is good at analyzing the situation when he plays chess…He rarely makes a mistake.”

To read more about Ofek and his battle with SMA, click here.

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