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by Steve Mullen / FightSMAInspirational stories about people and families fighting serious or incurable diseases. This podcast is produced by Steve Mullen for Fight SMA (www.fightsma.org) and its program, FighterMom (www.fightsma.org/fightermom). Fight SMA is an international nonprofit organization working to accelerate a treatment or cure for spinal muscular atrophy (SMA). FighterMom provides advice, support, and education for mothers who have become disease advocates fighting against any disease or disorder affecting their children.
Recent podcasts
Fighting Back Podcast #10 - Fighting Parry Romberg Syndrome
26/09/2007
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)
Fighting Back Podcast #9 - An Interview With Disease Researcher Dr. Alex MacKenzie
24/08/2007
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. You can listen using the Flash mp3 player above. Or, if youre a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If youre 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.
An Interview With Retiring NORD President and Founder Abbey Meyers (Podcast Episode 8)
01/08/2007
[audio:http://ripple.radiotail.com/1186/fighting-back-ep8-070731.mp3] 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 youre a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If youre 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. Share This Post Via Email or Social Bookmark
Fighting Back via Multimedia (Podcast Episode 7)
10/07/2007
[audio:http://ripple.radiotail.com/1186/fighting-back-ep7-070710.mp3] 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 youre a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If youre 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. Share This Post Via Email or Social Bookmark
Help with Home Improvements (Podcast Episode 6)
21/06/2007
[audio:http://ripple.radiotail.com/1186/fightingback-ep6-070620.mp3] 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 youre a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If youre 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, were also excited to now be featured on iTunes, and you can leave feedback there! Share This Post Via Email or Social Bookmark
