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Game to Get Away

Online games provide an alternate world in which to play, say gamers with neuromuscular diseases. Here’s a primer of terminology, gaming options, social tips and info on how playing may affect muscles. In addition, Kid Quest, page 69, provides Internet gaming safety tips for kids.
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  Home> Publications > QUEST > Vol 13,No.2 March/April 2006
MDA Issues New PSAs
Luke Christie and Jerry Lewis

The Muscular Dystrophy Association’s first 2006 public service announcement campaign features National Goodwill Ambas-sador Luke Christie, National Chairman Jerry Lewis and National Youth Chairman Billy Gilman.

Video PSAs were sent to television stations across the country. Stations are asked to air the messages at no charge to MDA.

In a group of ads tagged “Luke’s Dreams,” Luke and Lewis talk about MDA’s efforts to help make dreams come true for children with neuromuscular diseases. Luke is also the focus of a video PSA called “I Don’t Have Muscular Dystrophy,” which highlights the more than 40 neuromuscular diseases in MDA’s program.

Gilman’s video message urges young people to volunteer for MDA activities.

Print PSAs on the same themes will be sent to hundreds of newspapers, magazines and business journals. Last year, MDA PSAs received thousands of free placements in publications including Better Homes & Gardens, O (the Oprah Magazine), People and Time.

 

Former Ambassadors Grace National Calendar Cover

Canine Companions for Independence 2006 Calendar

Brother and sister Nicholas and Aubrey Olson, MDA National Goodwill Ambassadors in 1998-99, are pictured on the cover of the 2006 Canine Companions for Independence (CCI) calendar. Their mother, Cindy, appears with the two teens and their dogs.

Nicholas and Aubrey, who both have Friedreich’s ataxia, have assistance dogs provided through the CCI program. Nicholas is partnered with skilled companion Henry III, a Labrador/golden retriever mix, and Aubrey works with service dog Kethry, a black Lab. The Olsons and their dogs graduated from CCI’s North Central Regional Center in August 2003.

For more information about the calendar, visit the CCI Web site at www.caninecompanions.org.

 
Artist’s Lennon Tribute Featured in Vegas

A watercolor painting by a contributor to the MDA Art Collection is reproduced on items in the Hard Rock Hotel’s retail store in Las Vegas.

Imagine by Karen Wheeler

“Imagine” by Karen Wheeler of Henderson, Nev., is a portrait of the late singer/songwriter John Lennon with an eagle soaring in the sky. The image has been laser-etched onto a stainless steel dog tag, and is available for purchase as both a necklace and a key chain.

Wheeler, who has spinal muscular atrophy, said Lennon’s murder in 1980 motivated her to create the image. Lennon’s son, Julian, owns the original watercolor.

Wheeler’s painting “Snow Owl” is one of some 330 works in the MDA Art Collection. To see more of Wheeler’s artwork, visit www.KarenWheeler.com.

First Stepanek Award Goes to Columbia Researcher

Stephanie Zanssen, a physician-scientist in the Department of Neurology at Columbia University in New York, is the first recipient of MDA’s Mattie Stepanek Postdoctoral Research Fellowship Award.

The award gives Zanssen $60,000 a year for 2006 and 2007 to support her research and training in the biology of mitochondria. Zanssen, who has doctorates in biochemistry and medicine from the Technical University of Aachen in Germany, is studying the genetic control of mitochondrial proliferation.

Mitochondria are energy-producing parts of cells.

MDA established the fellowship to honor its former National Goodwill Ambassador, who died in 2004 of a mitochondrial muscle disease.

MDA Opens ALS Center in Oklahoma City

MDA’s ALS Division has designated the Integris Southwest Medical Center in Oklahoma City as the site of its 36th MDA/ALS center. The director of the new center is Brent Beson, neurologist and co-director of the MDA clinic at Integris.

MDA maintains 36 comprehensive, multidisciplinary ALS facilities in major medical centers across the country. They focus on treatment of people with amyotrophic lateral sclerosis (Lou Gehrig’s disease).

Beson, who has Charcot-Marie-Tooth disease, was featured on the national broadcast of the 2005 Jerry Lewis MDA Labor Day Telethon.

Lance Armstrong to Appear at MDA/ALS Bash

Augie and Lynne Nieto, co-chairs of MDA’s ALS Division, are hosting the Bash for Augie’s Quest to raise funds for MDA’s ALS program on March 22 at the Las Vegas Hilton. The evening is expected to draw over 2,500 supporters.

Seven-time Tour de France champion Lance Armstrong is scheduled to make a special appearance, and the Grammy-award-winning Doobie Brothers will perform.

For more information or to purchase tickets, visit www.augiesquest.org, or call MDA at (714) 550-0161.

Jeni Stepanek Signing New Book With Jimmy Carter

Just Peace: A Message of Hope, the last book by the late MDA National Goodwill Ambassador Mattie J.T. Stepanek, is being published this month by Andrews McMeel. The book is a collection of e-mail correspondence between Mattie and former President Jimmy Carter, and previously unpublished prose. The book was compiled and edited (at Stepanek’s request) by his mother, Jeni, after the popular young poet’s death in 2004 at age 13.

Jeni Stepanek of Rockville, Md., an MDA national vice president, is scheduled to appear with Carter on ABC’s “Good Morning America” on March 14 to discuss the book. Stepanek and Carter also are slated for several book signings.

A portion of the proceeds of Just Peace will be donated to MDA’s Mattie Fund to support medical research on childhood neuromuscular diseases.

Same Web Sites, New URLs

MDA's Web address has changed but the site offers the same important information. The new and improved URL for reaching MDA's Web site is www.mda.org and the new address for the MDA ALS Division site is www.als-mda.org.

The new addresses are designed to make it easier to find the sites and to improve MDA's ranking with seach engines. For an indefinite period, the old addresses (www.mdausa.org and http://als.mdausa.org) will continue to direct users to the sites.

 
 
 
     
     
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