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.

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.

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.

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 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.

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.

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.

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.

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.

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.

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.

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 the Fighter Mom website and go to events.

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.

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!

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

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.

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.

Links mentioned in this episode:
Matrix of SMN Mutations

To hear Episode 9 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.

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.

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.

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!

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.

In Episode 4 of the Fighting Back Podcast, produced by Fight SMA and FighterMom, we continue our discussion with Fight SMA President Martha Slay. In Episode 3 we discussed the Fight SMA National Spinal Muscular Atrophy Conference in Washington D.C., as well as what it takes to be a FighterMom. In the latest episode, she talks about the exciting relaunch of the FighterMom program. The program, developed by Fight SMA, is designed to support, educate, and inform anyone who has become a disease advocate fighting against a disorder affecting a child.

If you have a comment or question or are interested in having us tell your story, or the story of someone you know, 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 4 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.

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.

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.

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 at birth, to a childhood selling women’s lingerie with her parents, to her decision to go on tour to raise her profile leading up to a performance in London next spring to benefit the UK SMA charity Jennifer Trust.

In the podcast, Fight SMA’s Steve Mullen introduces us to Natasha, and we hear in her own words the inspirational story of how she has never let her disease slow her down.