There’s a new page on the Fight SMA website! The Spinal Muscular Atrophy Multimedia page will be home to videos, audio, photos, and other multimedia items about SMA and from events held by Fight SMA. You can go there right now to see the full version of Invisible Heroes, the video shown on the Fight SMA front page!

 FB 16 [14:00m]: Play Now | Play in Popup | Download

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.

ABC News talked about a new SMA test earlier this month in an interview with Dr. Laurie Demmer from Tufts Medical Center.  The test is designed to be given to potential parents before pregnancy occurs.

To view the video in a popup, click here.

Note: An advertisement plays before the ABC News video starts.

RICHMOND, June 6, 2008 — This week, the entire Virginia delegation to Congress has unanimously signed on as co-sponsors of the SMA Treatment Acceleration Act, a bill designed to increase federal support for research to develop a treatment for spinal muscular atrophy (SMA), the number-one inherited cause of infant death.

“This tremendous show of support and leadership will bring hope to thousands of families battling this deadly neuromuscular disorder,” said Martha Slay, president of Richmond-based FightSMA, one of the groups that is supporting the legislation.

“The Virginia delegation is setting a wonderful, bipartisan precedent for the rest of Congress and the Senate where we need to continue to build support this year for this legislation,” said Ms. Slay. “It is immensely gratifying that our home state has come through in such a big way.

“We particularly appreciate the support of Congressman Eric Cantor of Richmond, who was the original sponsor, along with Congressman Patrick Kennedy of Rhode Island. We would not be where we are today without Congressman Cantor taking the lead on this legislation,” said Ms. Slay.

The SMA Treatment Acceleration Act authorizes federal funding to:

• Upgrade and unify existing SMA clinical trials sites and establish a national clinical trials network for SMA.
• Establish a Data Coordinating Center to provide expert assistance and advice to SMA clinical trials sites.
• Expand and intensify federally supported research programs with respect to pre-clinical translational research related to SMA.
• Establish a research collaborative at the National Institutes of Health to ensure cooperation across multiple Institutes regarding research related to SMA.
• Enhance and provide ongoing support to the existing SMA patient registry in order to provide for expanded research on the epidemiology of SMA.
• Establish an SMA Coordinating Committee, consisting of representatives from relevant government agencies and the public, to coordinate government activities relating to SMA, serve as the principal advisor to agency heads, and conduct a study to identify barriers to the development of drugs for treating SMA and report findings and legislative recommendations to Congress.
• Require the Secretary of Health and Human Services to collaborate with the FDA and the Coordinating Committee to make recommendations for improving and expanding existing industry incentives to promote SMA drug development.
• Establish and implement a program for providing information and education on SMA to health professionals and the general public related to advances in the diagnosis and treatment of SMA and the provision of care to SMA patients.

The SMA Treatment Acceleration Act is supported by Families of SMA, FightSMA, the Muscular Dystrophy Association, and the SMA Foundation.

Co-sponsors from Virginia are: Senator John Warner, Senator Jim Webb, Congressman Eric Cantor, Congressman Rick Boucher, Congressman Jim Moran, Congresswoman Thelma Drake, Congressman Robert Wittman, Congressman Bobby Scott, Congressman Randy Forbes, Congressman Virgil Goode, Congressman Bob Goodlatte, Congressman Frank Wolf, and Congressman Tom Davis.

FightSMA, a nonprofit 501c3 corporation, was founded in Richmond, VA, in 1991 with the mission “to strategically accelerate research for a treatment and a cure for spinal muscular atrophy (SMA), the leading genetic cause of infant death.”

For more information, contact FightSMA at www.fightsma.org or 804.515.0080.

 FB 15 [20:48m]: Play Now | Play in Popup | Download

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.