Following the publication of his team’s gene therapy work with AAV-9 in spinal muscular atrophy (SMA) mouse models (Foust et al., Nature Biotechnology), Dr. Brian Kaspar participated in Nationwide Children’s Hospital’s monthly podcast about neuromuscular research. In this podcast, Dr. Kaspar spoke about a number of topics including:

• What is spinal muscular atrophy (SMA)
• The genetics of SMA
• The difficulty developing treatments for SMA
• The results AAV-9 has shown in SMA mouse models
• The need for additional studies before moving to human trials
• The next steps toward the clinic

The podcast is available by clicking here and scrolling to the May podcast. At the time of this post, there is a problem in how the podcast is available on the Nationwide Children’s Hospital website. The audio file has a comma added at the end of the file type which prevents players from recognizing file type. In order to play the podcast, simply download it to your computer, select the file name, and remove the comma. Your computer should then recognize the podcast as a MP3 file.

Recently, FightSMA launched the “Realizing the Dream” fundraising campaign which partners with the Gwendolyn Strong Foundation to advance a common goal: to bring SMA gene therapy to clinical trial. These efforts will support Dr. Kaspar and other collaborating scientists. To learn more about the gene therapy campaign and how you can get involved, click here.

 FB23 [7:40m]: Play Now | Play in Popup | Download

In this episode of Fighting Back Podcast, we talk with Chad Boerst from Hill-Rom.  Hill-Rom is a sponsor of the 2010 FightSMA Annual Conference, in Washington D.C.  The company was also a sponsor of the 2009 conference.

Chad tells us about the products that Hill-Rom manufactures and sells that help SMA patients and families, and why Hill-Rom is such a big supporter of FightSMA.

To listen to our interview with Chad, can use the Flash mp3 player above.  You can also 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.

 FB22 [8:25m]: Play Now | Play in Popup | Download

A Fighter Mom is someone who has been touched by tragedy, and gains the will to fight to help ensure no one else has to deal with the same pain.  In this episode of Fighting Back Podcast, we meet someone who fits that description to a “T”.

Kyra Oliver’s four-month-old son, Hayes, died in 2002.  The cause of death was given as Sudden Infant Death Syndrome, or SIDS.  Within days of his death, as Kyra was still fighting through the anguish, she founded the Hayes Foundation to raise awareness of SIDS.  In 2006, she launched a campaign to educate mothers and caregivers that the safest way for infants to sleep is on their backs.  The campaign began in Kyra’s home state of Virginia and is now spreading to other states.

Kyra continues her fight, and is now planning a fundraiser in her home city that combines her desire to educate about how to avoid SIDS and her love of competitive running.  The Capital 10-Miler is being held on Saturday, October 3.  For more information, visit http://www.rrrc.org.

To listen to our interview with Kyra, can use the Flash mp3 player above.  You can also 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.

 FB #21 [24:45m]: Play Now | Play in Popup | Download

People frequently ask, “What is a Fighter Mom?”  Fight SMA president and Fighter Mom founder Martha Slay recently spoke with an entire room full of them, at the Rhett Syndrome Foundation’s 25th Annual Conference in Northern Virginia.  She discussed the values of Fighter Moms and how to be a more effective one.  In this episode of Fighting Back Podcast, we bring you the audio from her keynote address.

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.

 FB 20 [17:49m]: Play Now | Play in Popup | Download

Genetic testing can be an incredible tool, but it can be difficult to understand how it works and what to expect.  We’re honored to have as our guest on the latest episode of Fighting Back Podcast, Dr. Joann Bodurtha, a geneticist from Virginia Commonwealth University Medical Center in Richmond, Virginia.  She explains how these tests can be important for parents and parents-to-be.

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.

 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 FightSMA’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.

 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.

 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.

 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.

 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.