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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.

Tags: podcast, sids, sudden infant death syndrome

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

 Fighting Back Episode 10 [11:30m]: Download

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 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.

To discuss this, or any, episode of Fighting Back, head to the Fighting Back Podcast Forum on the FighterMom Community.  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 this blog as well.

Tags: fightermom, parry romberg syndrome, podcast

 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.

To hear Episode 8 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 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 this blog as well.

Tags: fightermom, national institute for rare disorders, nord, podcast

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

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, a podcast produced by Fight SMA and FighterMom that tells inspirational stories about people and families fighting serious diseases, 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. 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 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 this blog as well.

Tags: inspirational, lazy eye, podcast

 Fighting Back #6 - Jennifer Sutton [10:00m]: Download

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 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 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!

Tags: podcast, sma, SMA Type II, spinal muscular atrophy

We’ve gotten a bit of feedback since launching Fighting Back almost two months ago, and we figure it’s time to share some of it. The podcast features inspirational stories about people and families fighting serious or incurable diseases. It’s produced for Fight SMA and FighterMom.

First up is a voice mail from a fellow podcaster. Dale from Tech Talk for Families called our feedback hotline at 206-984-3669 and left a message, which is loaded into the flash mp3 player below so everyone can hear it.

Thanks for listening, Dale!

Next up are some comments received via iTunes:

• (Rating: 5 stars) This is a well-produced cast about living with and beating diseases. Whether you suffer from such a thing or are completely healthy, there’s always something inspiring to be had from listening to the triumphs of others. Worth your Time.
• (Rating: 5 stars) Great Show! Tough topic and very inspirational! Well done!
• (Rating: 5 stars) Dealing with these topics is important, yet incredibly difficult. What an inspiration for those who struggle or have families who struggle with incurable diseases.

Thanks to all of those who have left feedback for us. If YOU have a question or comment, or would like to have your story told on Fighting Back, please email or (even better) leave a message on our feedback hotline at 206-984-3669!

Tag: podcast

 Fighting Back Episode 5 - Andrea Smith [11:00m]: Download

Andrea Smith keeps busy, and she does it helping seemingly as many people as possible. She’s the latest interview subject in the Fighting Back podcast, and we’re proud to tell the story of this amazing woman.

For almost her entire life, Andrea has had epilepsy. Her young son, meanwhile, has accommodative esotropia with strabismus, an eye disorder that can lead to partial blindness if not treated. Most people in her situation would have little time for helping others. Not Andrea. She not only helps others dealing with issues similar to those of her family, but also spends her time volunteering to help raise awareness and funds for research into spinal muscular atrophy (SMA), a disease to which she has no direct connection. She’s also turned herself into a self-educated insurance expert who is willing to help anyone at any time who has been denied an insurance claim.

In Episode 5 of Fighting Back we talk to Andrea about the various causes she supports, how she got involved, and how she finds the time.

To contact Andrea to request help with an insurance claim, you can post a message on the FighterMom Community.

Fighting Back tells inspirational stories of people and families fighting serious or incurable diseases, and we love to hear from our listeners! 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!

To hear Episode 5 of the Fighting Back Podcast, 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.

Tags: epilepsy, lazy eye, podcast, sma, spinal muscular atrophy

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 Fighting Back Podcast Episode 3 - Martha Slay [00:09:26m]: Download

In Episode 3 of the Fighting Back Podcast, our Steve Mullen talks with Fight SMA President Martha Slay. She discusses being the “Original FighterMom”, and the recent Fight SMA Annual Spinal Muscular Atrophy Conference, The Good Fight. This episode is the first in a two part conversation with Martha. In part two she’ll talk about the exciting new re-launch of the FighterMom program.

Martha and her husband, Joe, founded Andrew’s Buddies / Fight SMA in 1991 after learning that their son, Andrew, has spinal muscular atrophy type 2. The organization founded over their kitchen table has grown into an international nonprofit that’s funding researchers from around the globe. They later founded FighterMom, a program designed to help any mother who has become an activist against a disease or disorder affecting her child.

If you have a comment or question for the Fighting Back Podcast, or are interested in us telling your story or the story of someone you know, told in the Fighting Back Podcast, please contact us via the Fight SMA contact page, or leave us a message at 206-984-3669. Of course, you can always leave a message in the form of a comment on this blog as well.

To hear episode 3 of the Fighting Back Podcast, 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.

Tags: fight sma, fightermom, podcast, sma, spinal muscular atrophy

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 Fighting Back Podcast - Edibell Stone Interview [6:26m]: Download

The name and focus of the Spinal Muscular Atrophy Podcast, which made its debut last week, have changed. We have decided to integrate stories from FighterMom into the mix. The new focus of the podcast is stories about people and families fighting any serious or incurable disease. The new name is the Fighting Back Podcast, which reflects our dedication to families fighting orphan and other serious diseases. Stories about SMA will still be told, but if you’re a regular listener, you’ll hear about a wide variety of people who are fighting their own fight every day.

In the latest episode of the Fighting Back Podcast (which we’re calling episode 2 since Natasha Wood’s story falls squarely into the new podcast description) our Steve Mullen interviews Edibell Stone. Mrs. Stone is fighting Myotonic Muscular Dystrophy, along with much of the rest of her family. She recently found the FighterMom program by Fight SMA, which provides support and advice for mothers who have become disease advocates for their children. In her own words, we hear about Mrs. Stone’s family and about her fight against the disease.

If you have a comment or question for the Fighting Back Podcast, or are interested in us telling your story or the story of someone you know, told in the Fighting Back Podcast, please contact us via the Fight SMA contact page, or leave us a message at 206-984-3669. Of course, you can always leave a message in the form of a comment on this blog as well.

To hear episode 2 of the Fighting Back Podcast, 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 aggregator. Finally, you can of course download this episode, using the link above.

Tags: fightermom, incurable diseases, myotonic muscular dystrophy, orphan diseases, podcast