There’s a new page in the Fight SMA Spinal Muscular Atrophy Guidebook that anyone who is interested in orphan disease research should review.  The “Guidebook” is a one-stop compilation of information on SMA.  Parents of newly-diagnosed children, and even those who have known about spinal muscular atrophy for some time, can use it to answer the questions they might have about SMA.

The new page in the Guidebook is the Directory of Diseases Benefiting from SMA Research.  It’s a list of the more than 20 diseases that receive “collateral benefit” from breakthroughs in the search for a cure for SMA.  The list includes well-known disorders such as Parkinson’s and Alzheimers, as well as those that are lesser-known, such as Batten Disease and Niemann-Pick Disease.  Included in the directory are links to websites where information about the individual diseases can be found.  Fight SMA is inviting anyone with websites about these diseases to submit their sites for possible inclusion in the directory.

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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.