Mike Bush, news anchor for KSDK’s NewsChannel 5 in St. Louis, did a piece about a recent show at the Touhill Peforming Arts Center at the University of Missouri-St. Louis. But, being a musical version of a classic Mark Twain novel is not what made “The Adventures of Tom Sawyer, the Musical” extraordinary. This show was put on by the Variety Children’s Theater which provides children and teens with disabilities the opportunity to work alongside professionals in all parts of the production, including on-stage performance, costume design, set design, stage management, etc.

One of the children spotlighted in Bush’s report is Kaci Conley, a ten year old with spinal muscular atrophy (SMA). When she was born, Kaci’s parents were told she wouldn’t even speak. Through hard work she has proved the prediction wrong, winning the role of Penny Temple in the musical and singing and dancing with all the other actors.

To read the full article or watch the video of the news report, click here.

Bill Strong, who founded the Gwendolyn Strong Foundation with his wife Victoria and who recently joined the FightSMA Board of Directors, was invited to do a radio interview for “Focus on Issues.” This wonderful interview, which aired four times during this past weekend, covers a broad range of subjects from how the Strong’s daughter Gwendolyn is doing to the need for more research to how individuals can help in the fight against spinal muscular atrophy (SMA).

Click here to listen to the whole interview

The H1N1 flu has added even more stress to a season that is already very tense for families affected by spinal muscular atrophy (SMA) - cold and flu season. Here are a couple of notes that will hopefully help these families.

Doctors have recommended that SMA patients get both the regular and swine flu shots.

MDA has advised that “the intranasal form (sprayed into the nose)…variety of the vaccine is not recommeded for those affected by neuromuscular disease since it contains an attenuated (weakened) form of the H1N1 virus.”

Dr. Kathy Swoboda, of the University of Utah, has recommended that parents of “fragile children with SMA to get a prescription if possible for tamiflu, to be started at the earliest onset of flu-like symptoms” and that “those vulnerable individuals who are exposed to actively infected family members living within a household should begin treatment as well.” She also recommended that families “consult with your doctor regarding individual specific circumstances.” (For more information, click here. SMASpace membership and login required.)

Additional resources for getting through this flu season:

• CDC’s 2009 H1N1 Flu (Swine Flu)
• Action Steps for Parents of Children at Higher Risk for Flu Complications
• MDA’s H1N1 Resource Center
• Flu.gov
• H1N1 Flu Self-Evaluation
• CDC Says “Take 3” Actions To Fight The Flu

The Horton Family has known about spinal muscular atrophy (SMA) for less than two years, but they are rapidly becoming strong advocates for SMA families and research - visiting Mississippi’s members of Congress and engaging their community in the fight against the disease. One way that the Horton’s reach out is through newspaper articles, another of which was just published by The Clarion-Ledger, which circulates statewide.

From this article:

Evie Horton, 3, glides across the living room in her wheelchair.

Two years ago, she was a seemingly normal toddler. Her dad, Jeff Horton, recalls thinking, “She’s gonna walk any day now.” But she never did.

So concerned, Horton and wife, Dee, of Flowood took Evie to an orthopedic specialist in March 2008, but tests didn’t reveal any problem.

By April, Evie quit putting weight on her legs altogether. She was referred to a pediatric neurologist, and within a couple of months, was diagnosed with spinal muscular atrophy - a genetic disease that causes muscles to weaken and become useless.

It is the No. 1 genetic cause of death of children 2 and younger and about one in 6,000 infants are born with it.

The article also says:

This past summer, they wanted to do something on a larger scale to help others coping with SMA. Jeff reached out to politicians and received support from Congressmen Gregg Harper and Bennie Thompson, and Sen. Roger Wicker, all of whom co-sponsored the SMA Treatment Acceleration bill. Gov. Haley Barbour declared August Spinal Muscular Atrophy Awareness Month.

Later, with the help of friends, family and co-workers, the couple started the Stop SMA Foundation to raise awareness and fund research, specifically for treatment or drugs nearing FDA approval.

Funds generated may help usher in real hope for SMA patients because experts say a treatment or a cure is possible within five years.

To read the full article, click here.

For information about the SMA Treatment Acceleration Act, click here.

Michael Jay Paskin and Steve Taylor don’t appear to know each other, but from opposite sides of the country, both are using their physical strength to fight a deadly disease that robs its victims of their strength - spinal muscular atrophy (SMA).

Paskin is training to complete the Ironman Arizona triathlon which consists of a 2.4 mile swim, a 112 mile bike, and a 26.2 mile run. He started TriathlonForACure.com to document his training, but also to raise awareness of SMA and funds for the Gwendolyn Strong Foundation. Paskin says that his goal “is to parallel the hard work and determination it takes to complete each triathlon with the hard work and determination it will take to eliminate SMA.” To read more about Michael Paskin’s efforts, click here.

Last month, Taylor completed a 50-mile “ultra marathon” in Washington, DC. The police officer from New Bedford, MA ran in honor of his friends’ 22-month old son Owen who has SMA. Taylor said, “I was thinking of Owen and that drove me not to quit.” Through this race, Taylor was able to raise $3,000 in donations for Owen’s family and he plans to run an even longer race in Owen’s honor next year. To read more about Officer Taylor’s run, click here.

Saturday, September 26, 2009 was a spectacular night in Toronto and an even greater success for FightSMA’s Canadian chapter Tori’s Buddies.

A Casino Royale theme transformed the Fermenting Room at Toronto’s Historic Distillery District. It was a great room, and the company even better. A heartfelt thank you to all of the 300 supporters who attended the 10th annual FightSMA Canada Gala. It was a “full house” ultimately “betting” that we will one day “hit the jackpot” and find a cure for Spinal Muscular Atrophy (SMA). We know that thanks to these supporters, we are raising awareness and the needed funds for the research that will get us to that goal. Because of the generous donors, we have surpassed a very impressive $175,000 so far, and we are still counting. Many thanks to our lead Sponsor CML Healthcare and our other sponsors Wilson Truck Lines, Paramount Pallet,TD Securities and PWC. We hope to see you all again next year.

The pictures are fabulous and all the fun can be viewed at www.hadaball.com. Just click on “Events,” then select “SMA Gala.”

A heartfelt “Thank You!” from Tracy, Shawn and the FightSMA Board of Directors.