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 [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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, [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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. [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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, [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

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 [...]

Listen Now:

If you don’t see the player, you don’t have the Adobe Flash Player installed. Get it here. In Episode 4 of [...]

Listen Now:

If you don’t see the player, you don’t have the Adobe Flash Player installed. Get it here. In Episode 3 of [...]

Listen Now:

If you don’t see the player, you don’t have the Adobe Flash Player installed. Get it here. The name and focus [...]

Listen Now:

Welcome to Fight SMA?s first entry into the world of podcasting. We spoke recently to Natasha Wood (pictured to the left), who has spinal muscular atrophy and is currently starring in her own one-woman autobiographical show in North Hollywood, California. The show, dubbed Rolling with Laughter, covers her life from her diagnoses [...]

Listen Now: