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.

A new website has been launched to, in the words of NINDS’s Dr. John Porter, “help parents understand the how-when-where-why of clinical studies and clinical trials in their children.” While not a spinal muscular atrophy (SMA) specific site, the videos and articles address many of the concerns that parents have when considering enrolling their child in a clinical trial, including SMA trials. Topics include “Importance of Research In Kids,” “Safety and Protections,” “Questions You Should Consider Asking,” and “Effects on the Family.”

The site was developed and made possible by the support of: National Heart Lung and Blood Institute (NHLBI), NIH, National Institute of Child Health and Human Development (NICHD), Best Pharmaceuticals for Children Act (BPCA), National Marfan Foundation (NMF), National Center for Research Resources (NCRR), NIH, and Gerber Foundation.

Check out the website by visiting: www.ChildrenAndClinicalStudies.nhlbi.nih.gov.

Fight SMA’s yearly fundraiser, SMAsquerade, is coming up on October 13, and time is running out to submit your absentee bid for some of the INCREDIBLE items we have available this year.  Absentee bids must be submitted via email or fax by 5:00 p.m. on October 12.  All proceeds from the auction will go toward finding a cure for spinal muscular atrophy, the leading inherited killer of children under two.

Here’s a look at some of the items up for bids at SMAsquerade: Make Tracks!

• Corporate box seats to the 2008 Kentucky Derby and Kentucky Oaks!
• An eight-day whale tracking adventure in the Gulf of California, accompanied by a National Geographic Senior Editor and Photographer!
• An amazing package trip to Nashville during Christmas 2007, including a three night stay for four at the Nashville Opryland Resort!
• A 10-day stay in a privately-owned hacienda in Clearwater, Florida!
• MUCH, MUCH more!

More details, plus a video of the beach house in Florida, are available at the SMAsquerade 2007 page on the Fight SMA website.  Absentee bidding details are available here.

SMAsquerade 2007 is presented by SunTrust! 

Please join in the fun!

The video posted below is outstanding, and we recommend everyone take the time to watch it. It was produced by Spinal Muscular Atrophy Mom Kerry Schnitzlein for Atlanta’s SMAsquerade SMArdi Gras, held on February 17. The video shows the great personalities of the kids for whom Fight SMA was created. It’s a very moving piece and we thank Kerry for making it available for everyone.

Tags: atlanta, children, disabilities, disability, families, health, kids, medical, sma, smasquerade, smatlanta, spinal muscular atrophy, video