We have a great profile of a true Fighter Mom in this edition of Fighting Back Podcast. 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.

You can listen to Fighting Back Podcast #22 by using this download link, or by subscribing via iTunes. You can also use the Fighting Back Podcast Feed in your favorite feed reader. Thanks for listening!

Download Fighting Back Podcast #14 [25:01]
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.

Download FB Episode 13 [6:46m]
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 Fighter Mom events.

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, use the download link below, load the Fighting Back Podcast Feed into your favorite feed reader, or subscribe via iTunes or other podcast directories like Blubrry.


Download Fighting Back Episode 12 [12:24m]

Listen to Fighting Back Podcast Episode 11

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 FighterMom contact page. You can also leave a message in the form of a comment on this blog as well.

Listen to Fighting Back Podcast #10

Welcome to episode 10 of Fighting Back, the podcast that features inspirational stories of people and families fighting serious or incurable diseases. I'm thrilled to reach this milestone episode, and we've found another true FighterMom, whose story is truly inspirational.

16-year-old Kelly Sperry was diagnosed with Parry Romberg Syndrome, a disease that causes a wasting of one side of the face, among other things. Not only is there no cure, doctor's aren't completely sure what causes it. Kelly's parents, Donna and Jay, decided that they wanted to help provide support for other victims of this rare disorder. They founded the Parry Romberg Foundation.

In episode 10, host Steve Mullen interviews Donna Sperry. We hear more about the disease and how Donna is Fighting Back.

Links mentioned in this episode:
Parry Romberg Foundation (www.parryrombergfoundation.org)
Bully Police USA (www.bullypolice.org)

To hear Episode 10 of Fighting Back, you have several options. You can listen using the link above. Or, 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 FighterMom contact page or leave us a voice mail message at our new voicemail hotline number – 206-222-1903. You can also leave a message in the form of a comment on the FighterMom Community as well.

Fighting Back Episode 9 [11:45m]: Download

This episode is a bit of a departure for the Fighting Back Podcast. We usually interview people and families fighting against serious diseases. We’ve spoken to a woman trying to raise the profile of SMA through a one-woman stage show, a mother starting a foundation to raise money for myotonic muscular dystrophy, a mother who launched what became a national organization to fight for orphan disease, and many more. This episode is a bit different, however. This time we’re talking to a man who is fighting diseases directly.

Dr. Alex MacKenzie is a pediatrician, spinal muscular atrophy researcher, and director of the Research Institute at Children’s Hospital of Eastern Ontario. In episode 9 of Fighting Back, host Steve Mullen talks with Dr. MacKenzie about SMA research and how it’s benefiting many other diseases.

To hear Episode 9 of Fighting Back, you have several options. 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 FighterMom contact page or leave us a voice mail message at our new voicemail hotline number – 206-222-1903.

Fighting Back Episode 8 [12:00m]: Download

Abbey Meyers isn’t retiring completely, but she is going to take a little time for herself after nearly 25 years of fighting for diseases that many people didn’t seem to care about. Abbey is founder and president of the National Organization for Rare Disorders, or NORD. Recently she announced she’s stepping down from leading the group.

Fighting Back, a podcast with inspirational stories about people and families fighting serious or incurable diseases, had the pleasure of being able to interview Abbey. She talked about her history with NORD, her decision to fight when her son was diagnosed with Tourett’s Syndrome (she’s a FighterMom!), and where she thinks the organization is going in the next 10 years. Among her ongoing concerns is the lack of universal portable healthcare.

We salute Abbey Meyers, and thank her for the work she’s done for the orphan disease community.

If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the FighterMom contact page or leave us a voice mail message at our new voicemail hotline number – 206-222-1903.

Fighting Back Episode 7 [08:30m]: Download

Welcome to another episode of Fighting Back, the only podcast featuring inspirational stories of people and families fighting serious or incurable diseases. It's produced by FighterMom and Fight SMA.

There are a number of ways to fight a serious or incurable disease. Kelly Harmsen found a rather creative and very effective technique. Her son has amblyopia, or lazy eye, a disorder that requires him to wear an eye patch for several hours every day. If his condition is not treated properly, he could lose the sight in the affected eye. The problem is, for a time he refused to wear the patch. Kelly turned to the multimedia world for a solution, creating a puppet show on DVD that would not only entertain her son but also teach him why it’s important to wear his patch.

In episode 7 of Fighting Back, we talk to Kelly and hear how she came to create her company, Bjort & Company, Inc., and DVD, The Eye Patch Kids.

More information on Amblyopia is available from Prevent Blindness America.

To hear Episode 7 of Fighting Back, you have several options. 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 FighterMom contact page or leave us a voice mail message at our new voicemail hotline number – 206-222-1903.

Download Episode 6 of Fighting Back

One thing that’s universally known by parents fighting against diseases affecting their children is that improvements to the home are usually necessary. Unfortunately, those improvements are sometimes so expensive that it’s difficult if not impossible without some assistance. Jennifer Sutton found herself in that situation, and fought back.

In episode six of Fighting Back, a podcast that tells inspirational stories about people and families fighting serious diseases, we talk to Jennifer Sutton from New York. Her 13-year-old daughter, Shannon, has spinal muscular atrophy type 2. As Shannon grew older and became less mobile, it became apparent that improvements would need to be made to her home. Ms. Sutton fought to get assistance with those improvements and won, with her state helping with 15 to 20% of the bill.

Ms. Sutton says different states have different rules about what money is available. For more information, start with your local health department. A list of websites for health departments in individual states is available here.

To hear Episode 6 of the Fighting Back Podcast, you have several options. 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 or leave us a voice mail message at 206-984-3669. You can also leave a message in the form of a comment on this blog as well. Finally, we’re also excited to now be featured on iTunes, and you can leave feedback there!