Many of you are likely familiar with Peter Shankman, and if you’re in Richmond, Virginia, you have a unique opportunity to not only hear him speak but also help Fight SMA at the same time!

Peter is the social media and public relations guru responsible for HARO, or “Help a Reporter Out”.  It’s a free mailing list that connects PR folks with reporters who need sources.  He’s making an appearance in Richmond to benefit Fight SMA.

Peter Shankman’s appearance is being organized by The Hodges Partnership, a PR firm run by a couple of good friends of Fight SMA.  The event is on Tuesday, January 27 at 7:30am at the WCVE-TV studios (address: 23 Sesame Street in Bon Air).  The cost is $25, with money going toward Fight SMA’s quest for a cure. For more information, please call Julia Webster at 804-788-1414.  You can also visit the Facebook event page built by The Hodges Partnership.

From the University of Missouri News Bureau:

MU Researchers Discover Target that Could Ease Spinal Muscular Atrophy Symptoms

Jan. 7, 2009
Story Contact: Kelsey Jackson, (573) 882-8353, JacksonKN@missouri.edu

COLUMBIA, Mo. – There is no cure for spinal muscular atrophy (SMA), a genetic disorder that causes the weakening of muscles and is the leading genetic cause of infant death, but University of Missouri researchers have discovered a new therapeutic target that improves deteriorating skeletal muscle tissue caused by SMA. The new therapy enhanced muscle strength, improved gross motor skills and increased the lifespan in a SMA model.

“This therapy does not directly target the disease-causing gene; instead it targets the pathways that affect muscle maintenance and growth,” said Chris Lorson, investigator in the Christopher S. Bond Life Sciences Center and associate professor of veterinary pathobiology in the MU College of Veterinary Medicine. “We administered a particular protein, follistatin, to SMA mouse models to determine if enhanced muscle mass impacts the symptoms of SMA. After treatment, the mice had increased muscle mass, gross motor function improvement and an increase in average life span of 30 percent.”

With the therapy, MU researchers inhibited myostatin, a protein that limits muscle tissue growth. Myostatin activity can be reduced significantly by enabling several proteins that bind to myostatin, including follistatin. When myostatin is inhibited, muscle mass and strength increase.

SMA is caused by the loss of survival motor neuron-1(SMN1). Humans have a nearly identical copy gene called SMN2. Because of a single molecular difference, SMN2 alone cannot compensate for the loss of SMN1.

“While most work in the SMA field has logically focused on targeting the SMN2 gene, the results of this study suggest that skeletal muscle is a viable therapeutic target that may reduce the severity of some SMA symptoms,” said Lorson, who also is the scientific director for FightSMA, a private spinal muscular atrophy research foundation in Richmond, Va. “Because follistatin does not alter the expression level of SMN protein, the most effective treatment would combine strategies that directly address the genetic defect in SMA as well as SMN-independent strategies that enhance skeletal muscle.”

The study, “Delivery of recombinant follistatin lessens disease severity in a mouse model of Spinal Muscular Atrophy,” was published online in the December issue of Human Molecular Genetics. The research team also consisted of graduate students Frankie Rose and Virginia Mattis, and Hans Rindt, an assistant research professor. Recently, Lorson was awarded a $370,000 grant from the Muscular Dystrophy Association to continue his research on the role of muscle in SMA.

Click here for the original news release. To read the study’s abstract, click here.

Happy New Year from all of us at FightSMA!  As we begin our work in 2009, we have many things to look forward to, and many worthy goals to achieve. We have a fresh beginning and a strengthened resolve to see the SMA Treatment Acceleration Act become law.  There will be new and cutting edge research executed by our elite and brilliant SMA scientists. The bar will be raised to increase public awareness and funding for SMA.  And, most importantly, we will join hands once again with our friends in the fight and grow our army to eradicate SMA forever.

Were not the only ones with these goals in mind.  Just a few days ago, it was brought to our attention that an individual had posted their New Years resolution on the popular website, PostSecret.com.  PostSecret is an online community where individuals can anonymously post secrets or share thoughts on a one-sided e-postcard.  The website gets 2.3 million unique visitors every month.  And one of those visitors is a friend in the fight.  Below are their poignant New Years resolutions:

We hope that you, too, will share this resolution with us and all of the SMA community in 2009.

Warmest Wishes for the New Year!

Fight SMA

The Richmond Times-Dispatch this week profiled an effort that benefited Fight SMA last month. Mondial Assistance, an international travel insurance and assistance provider with U.S. operations based near Richmond, Virginia, purchased December air time on WWBT-TV and produced spots featuring the women whose efforts improve the lives of others. One of those spots profiled Fight SMA President Martha Slay. Here’s an excerpt from the Times-Dispatch article:

Martha Slay, founder and president of FightSMA, was selected for helping to raise funds to support research and treatment for Spinal Muscular Atrophy (SMA), the leading genetic killer of children under 2. Slay, of Richmond, has helped raise more than $6.5 million.

Founded as a nonprofit organization in 1991 after Slay’s oldest son, Andrew, was diagnosed with SMA at 14 months of age, FightSMA has 19 chapters in the U.S. and Canada. It supports SMA research projects at more than 40 universities and institutions in the U.S., Canada, United Kingdom, France and Italy. Most recently, Slay helped to create the “Fighter Mom” program that helps mothers deal with a variety of childhood health disorders.

You can read the entire article here.