We’re very excited around here this week, because the FighterMom program was profiled in an article in USA Today, the one of the nation’s largest newspapers! The story was a sidebar to an article about Shea Megale, a little girl from Northern Virginia whose stories about her assistance dog will be published and sold at FAO Schwarz.

Here’s an excerpt from the sidebar about the FighterMom program:

Martha Slay stepped up to fight for her son when he was diagnosed with spinal muscular atrophy (SMA) in 1987. Now she spreads her lessons learned to other mothers who want to fight for their children.

Fighter Mom, a program Slay started in 2006 almost 20 years after founding FightSMA with her husband, Joseph, is designed to help “mothers and others” who want to help find a treatment or a cure for their child’s disease.

To read the entire article, and learn about Shea Megale’s stories, read the entire article on the USA Today website.

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Fight SMA’s upcoming SMAsquerade: Make Tracks! event was featured this week in an interview on the national radio show At the Races with Steve Byk. The program airs daily on Sirius Satellite Radio channel 126, and is all about the world of horse racing. Our Steve Mullen was interviewed on Tuesday, September 25th about one of the many exciting items available during the upcoming SMAsquerade live auction — six corporate box seats at next year’s Kentucky Derby!

The 5th annual SMAsquerade event takes place on October 13, 2007, and is Fight SMA’s signature fundraiser. It will feature live and silent auctions of amazing items. To learn more, visit the event page on the Fight SMA website.

To listen to the At The Races interview, visit the archives page on the show’s website. The interview took place at the end of hour one.

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 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.

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We’re very excited to announce that the Consensus Statement for Standard of Care in Spinal Muscular Atrophy has been published in the August 2007 supplement of the Journal of Child Neurology. The recommendations in the document were prepared by an an international body of clinical experts. The panel worked with more than 60 spinal muscular atrophy experts in the field to achieve consensus on 5 care areas: diagnostic/new interventions, pulmonary, gastrointestinal/nutrition, orthopedics/rehabilitation, and palliative care.

To read the document, download it here in PDF form.

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From the SMA Project:

Dear Colleague,

We have now posted the Supporting Documentation (including the Subcontract Agreement) for the SMA Project (http://www.smaproject.org) Request for Proposals (RFP) LD-090707. This RFP seeks to identify facilities to conduct preclinical testing of chemical compounds with the ultimate goal of submitting an Investigational New Drug (IND) application to the U.S. Food and Drug Administration (FDA). We have also posted an updated version of the RFP (Attachment B in the RFP has been updated).

The RFP and Supporting Documentation can be accessed through the Solicitations page of the SMA Project website at http://www.smaproject.org/solicitations.html. Proposals are due by 3 p.m. Eastern Time on October 5, 2007.

Studies to be conducted under the resulting contract will include preclinical safety, toxicology, pharmacokinetic/dynamic, and biodistribution studies with candidate small molecule compounds that act as therapeutic agents for spinal muscular atrophy (SMA). While a broad range of Good Laboratory Practice (GLP) and non-GLP studies is anticipated, capability to conduct studies according to GLP is required. Science Applications International Corporation (SAIC), on behalf of the Government, shall supply the Offeror with a small amount of each candidate therapeutic compound. For certain compounds provided to the Contractor, SAIC may request a comprehensive Product Development Plan for services to be provided by the Contractor. Facilities will be evaluated on their past experience in preclinical, IND-directed small molecule development, as well as the proposed schedule and cost of studies required.

The National Institute for Neurological Disorders and Stroke (NINDS) (http://www.ninds.nih.gov/) launched The SMA Project: A Collaborative Program to Accelerate Therapeutics Development for Spinal Muscular Atrophy in September 2003. This program funds milestone-driven research aimed at identifying and rapidly developing a treatment for SMA, a paralyzing neurodegenerative disease of childhood.

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