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2011 FightSMA Conference Information and Hill-Rom Interview (Fighting Back Podcast #24)

Posted: May 2nd, 2011 | By: Staff | No Comments

Monday, May 2nd, 2011

Welcome back to the only podcast dedicated to information about SMA and the stories of people fighting it and other serious or incurable diseases. If you haven’t listened to this podcast before, you can subscribe via the Fighting Back Podcast RSS feed, or at the Fighting Back iTunes Store. Listen to this episode by clicking the right-facing arrow above.

In this episode, we get you ready for the 2011 FightSMA Annual Conference in Washington, D.C., with information about the conference at the first-ever webcast of the entire “Thriving with SMA” panel. We also introduce you to one of this year’s conference sponsors, Hill-Rom, with an interview with Hill-Rom VP and General Manager Craig Boerst. Craig talks about the company, and its product, The Vest. The Vest is an airway clearance system that is most helpful to SMA patients. Among other things, Craig explains how you can receive help with the process of acquiring the device:

“Typically the local pulmonologist has familiarity with the process, which includes our company helping you through the entire reimbursement process. We also offer patient financial assistance for those who may need assistance. For more information, you can visit our website at http://www.thevest.com, or call us at 1-800-426-4224 and we would be happy to help.”

If you have feedback, a comment or question about Fighting Back Podcast, use the comments form below, or contact us directly!

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Categories : Podcasts

Dr. Brian Kaspar Discusses Gene Transfer in SMA

Posted: August 5th, 2010 | By: Staff | No Comments

Thursday, August 5th, 2010

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.

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Categories : Podcasts, Spinal Muscular Atrophy Science and Research

Fighting Back Podcast #23 – Hill-Rom

Posted: April 23rd, 2010 | By: Staff | No Comments

Friday, April 23rd, 2010

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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.

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Categories : Podcasts, Spinal Muscular Atrophy Events

Fighting Back Podcast #22 – This Side Up (Kyra Oliver)

Posted: September 24th, 2009 | By: Staff | No Comments

Thursday, September 24th, 2009

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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.

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Categories : FighterMom Disease Advocacy News, Podcasts

Fighting Back Podcast #21 – A Room Full of Fighter Moms (Martha Slay)

Posted: August 20th, 2009 | By: Staff | No Comments

Thursday, August 20th, 2009

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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.

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Categories : FighterMom Disease Advocacy News, Podcasts