FB 19 [18:51m]: Play Now | Play in Popup | Download

This is part 2 of our 2009 State of the Disease Podcast for Spinal Muscular Atrophy, where we look back at the scientific advances in SMA research in 2008 and look forward to what might come in 2009.  This two-part series features the co-chairs of Fight SMA’s scientific committee, Alex MacKenzie, M.D. (Director of the Children’s Hospital of Eastern Ontario Research Institute) and Chris Lorson, Ph. D. (Assistant Professor at the University of Missouri-Columbia).

In part one Alex and Chris discussed three of the research advances they picked as being the most significant in 2008.  In this episode, they  finish that discussion by highlighting the following 2008 findings:

• Exercise promotes motor unit development and survival in mild SMA mice
• A variety of RNA-based therapeutics that are moving in vivo
• SMA Standards of Care
  

We also tackle the future … what might come in 2009 in spinal muscular atrophy research.

If you haven’t listened to part one of this two-parter, it’s strongly suggested you visit this post, and listen there first!

To listen to this episode, 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 page! You can also leave a message in the form of a comment on this blog as well.

Tags: Alex MacKenzie, chris lorson, disease research, sma, spinal muscular atrophy

 FB 18 [14:02m]: Play Now | Play in Popup | Download

2008 was an important year in spinal muscular atrophy research, as scientists and doctors continued their work to find a treatment or cure for the neuromuscular disease.  This episode of Fighting Back Podcast is the first part of our yearly “look back and look forward”.  This time we look back at 2008 and look forward to 2009 with the co-chairs of Fight SMA’s scientific committee, Alex MacKenzie, M.D. (Director of the Children’s Hospital of Eastern Ontario Research Institute) and Chris Lorson, Ph. D. (Assistant Professor at the University of Missouri-Columbia).

Before the podcast recording session, Dr. MacKenzie and Dr. Lorson forwarded their lists of what they believe to be the most important scientific findings in SMA research in 2008.  In this episode, we have a spirited discussion of the first three items on the list, including what they are and why they’re important.  The advances discussed in this episode are:

• A non-SMN modifier of disease: Plastin-3 (B. Wirth)
• Muscle vs nerve SMN rescue in SMA mice (A. Burghes)
• Nutritional supplement w/ TSA significantly increases SMA mouse survival (C. Sumner)

(Note: We are efforting links for each of these. Please check back!)

In part 2 of our State of the Disease Podcast for SMA, which will be released next week, we discuss the remaining items on the list, including the role of exercise promoting motor unit survival and the groundbreaking SMA Standards of Care that were released in 2008.  Drs. Mackenzie and Lorson also discuss the important findings they they hope will happen in 2009.

To listen to this episode, 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 page! You can also leave a message in the form of a comment on this blog as well.

Tags: Alex MacKenzie, chris lorson, disease research, sma, spinal muscular atrophy

 FB 17 [19:32m]: Play Now | Play in Popup | Download

This is the last in a series of four Fighting Back Podcast episodes that feature audio from the Fighter Mom Friday event, held on May 9, 2008 in New York City.  The workshop was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and several of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 17 features a seminar from Steve Eichenauer, a partner at lobbying firm Public Strategies Washington.  He discusses how Fighter Moms can talk to their legislative representatives to raise awareness of their cause and attempt to increase funding.

Note: Mr. Eichenauer refers during his talk to a one page information sheet that he handed out during the seminar.  That information sheet is available for download in .pdf format Fighter Mom Multimedia page.

More information on Fighter Mom Friday can be found on the Fighter Mom website.  More audio from the event is available on the Fighter Mom Multimedia page, or by subscribing to this podcast.

To listen to this episode, 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.

Tags: Fighter Mom Friday, fightermom, lobbying

 FB 16 [14:00m]: Play Now | Play in Popup | Download

This is the third in a series of Fighting Back Podcast episodes featuring audio from the Fighter Mom Friday event, held on May 9, 2008 in New York City.  The workshop was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and several of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 16 of Fighting Back features Dr. Alex MacKenzie, Director of the Children’s Hospital of Eastern Ontario Research Institute.  The audio for the episode was recorded during Dr. MacKenzie’s seminar.  He discusses the relationship between families and researchers, and how they can help each other.

More information on Fighter Mom Friday can be found on the Fighter Mom website.  More audio from the event is available on the Fighter Mom Multimedia page, or by subscribing to this podcast.

To listen to this episode, 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.

Tags: Fighter Mom Friday, fightermom, health, medical, researchers

 FB 15 [20:48m]: Play Now | Play in Popup | Download

This is the second in a series of Fighting Back Podcast episodes that includes the audio of seminars from Fighter Mom Friday. The workshop, held on May 9, 2008 in New York City, was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and a number of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 15 of Fighting Back Podcast features Louise Raymond, Senior Director of Global Corporate Responsibility for McGraw-Hill Companies. During her talk at Fighter Mom Friday, she discussed corporate giving and how to approach not only her companies, but other companies as well, to inquire about grants and funding for nonprofits.

Note: Ms. Raymond refers during her talk to a Powerpoint presentation. That presentation is available for download on the Fighter Mom Multimedia page.

Be sure to check back or subscribe to this podcast, so you don’t miss any of the upcoming episodes of Fighting Back!

To listen, 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.

Tags: corporate giving, Fighter Mom Friday, fightermom

 FB 14 [25:01m]: Play Now | Play in Popup | Download

This episode of Fighting Back Podcast is the first of several to be published in the coming days and weeks that will feature audio from the Fighter Mom Friday seminars. The Fighter Mom Friday workshop, held on May 9, 2008, was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and a number of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 14 of Fighting Back features audio from the seminar given by Nancy Jeffrey, senior editor and editor of the “Heroes” section of People Magazine. Ms. Jeffrey gave a wonderful talk on how her magazine handles feature stories (particularly those about diseases) and on how FighterMoms can use media relations in general.

Note: Ms. Jeffrey refers during her talk to a Powerpoint presentation. That presentation is available for download on the Fighter Mom Multimedia page.

Be sure to check back or subscribe to this podcast, so you don’t miss any of the upcoming episodes of Fighting Back!

To listen, 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.

 FB Episode 13 [6:46m]: Play Now | Play in Popup | Download

Fighter Mom Friday is right around the corner! This new “holiday” created by Fight SMA and the Toy Industry Foundation (TIF), which is held on the Friday before Mother’s Day, is designed to celebrate the special type of mother or parent that is fighting against a serious disease or condition. They aren’t content to take care of their child as best they can. They want to help rid the world of the disease or condition itself. To celebrate the first Fighter Mom Friday, Fight SMA and TIF are holding a special workshop at the New York Palace Hotel in New York City. In this special “bonus” episode of Fighting Back Podcast, Fight SMA President Martha Slay fills us in on the details.

To register for Fighter Mom Friday, please go to the Fighter Mom website and go to events.

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.

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!

Tags: fightermom, health, medical, podcast, progeria, science

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.

Tags: disease research, podcast episode, sma, spinal muscular atrophy

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!