Megan Assink – Megan Assink, 4, of Grand Rapids, Mich., who’s affected by Pompe’s disease (acid maltase deficiency), is among the first people to receive Myozyme, the first definitive treatment for the rare neuromuscular disease. The drug was developed by Genzyme Corp. with MDA’s assistance, and was approved this spring by the FDA. People with Pompe’s disease experience progressive weakness of voluntary and respiratory muscles. Until now, most children with the infantile form of the disease have had a life expectancy of about two years. Researchers expect that Myozyme, which replaces the missing enzyme, should significantly extend the strength and life expectancy. Megan’s sister, Kelsey, died of Pompe’s in 2002 at age 9.
Caeser Chacon – MDA Goodwill Ambassador for Florida, 15-year-old Caeser Chacon of Tampa, Fla., has limb-girdle muscular dystrophy, a genetic degenerative disease that weakens the muscles around the shoulders and hips. He uses a power wheelchair. Caeser attends various events with his family and speaks on behalf of the Association. He’s in the 10th grade at Tampa Bay Technical High School and loves hanging out with friends, talking on the phone and playing video games.
Jonathan Chacon – 14-year-old Jonathan Chacon of Tampa, Fla., has limb-girdle muscular dystrophy. Like his brother Caeser, he uses a power wheelchair. Jonathan is a ninth-grader at King High School in Tampa and enjoys listening to music, watching TV, playing video games and swimming. Both Jonathan and Caeser attend MDA summer camp.
Luke Christie – MDA National Goodwill Ambassador, Luke Christie, a 13-year-old from Due West, S.C., has spinal muscular atrophy (SMA), a progressive motor neuron disease that causes weakness in the arms, legs and torso. As MDA’s national ambassador, Luke travels the country with his family, representing the Association and the people it serves. Luke is in the eighth grade at Dixie High School in Due West and is interested in becoming a reporter. He enjoys reading, writing and Boy Scouts, in which he’s a First Class Scout working on his personal management merit badge.
Calvin Ray Johnson – Country singer Calvin Ray Johnson, 26, of Mount Washington, Kent., is scheduled to perform on the national broadcast of the Jerry Lewis Labor Day Telethon. Johnson has Duchenne muscular dystrophy and uses a manual wheelchair for mobility. Johnson is an accomplished singer, artist and businessman. In June 2004, he opened Calvin Ray’s Live Music in Leitchfield, where he and his Blue Moon Highway Band perform. He’s recorded four CDs, performed in Nashville, and appeared on the 2001 and 2003 national broadcasts of the MDA Telethon. Johnson also performed at the 2001 Academy of Country Music’s Celebrity Golf Classic in Burbank, Calif. He’s appeared on the Louisville broadcast of the MDA Telethon for several years.
Andrew Kilbarger – Andrew Kilbarger, 9, of Lancaster, Ohio, received the first injection in MDA’s gene therapy trial for Duchenne muscular dystrophy on March 28 at Columbus (Ohio) Children’s Hospital. The trial will test six boys with DMD. The disease begins in childhood and causes weakness and wasting of voluntary muscles. In later stages, it weakens the heart and muscles necessary for breathing. “I’m proud to introduce this courageous family, whose willingness to participate in the early trials of a very promising treatment is a historic contribution to MDA’s fight against Duchenne muscular dystrophy,” MDA National Chairman Jerry Lewis said. “Their story is sure to inspire Telethon viewers to support our ongoing lifesaving research efforts.”
Augie and Lynne Nieto – Augie and Lynne Nieto of Corona del Mar, Calif. are co-chairpersons of the Muscular Dystrophy Association’s ALS Division. Augie, 48, received a diagnosis of amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) in March 2005. Augie is the co-founder and former president of Life Fitness, and the current chairman of Octane Fitness. As co-chairs of MDA’s ALS Division, the Nietos help raise awareness through public appearances, speaking engagements, media interviews and public service announcements. Augie also serves MDA as a national vice president. He has launched an ALS campaign with MDA called Augie’s Quest, which has raised more than $4 million to benefit MDA’s ALS Division research program.
Jacob Richard – 2006 MDA Goodwill Ambassador for Houston, 9-year-old Jacob Richard of Sugar Land, Texas, has Duchenne muscular dystrophy, a genetic disorder characterized by progressive wasting and weakness of the voluntary - or skeletal – muscles. The disease eventually affects the heart and breathing muscles. Jacob uses a wheelchair part time. As an MDA ambassaor Jacob attends various events with his family to speak on behalf of the Association. He’s a third-grader at St. Laurence Catholic School and loves reading, singing, swimming and listening to music.
Jeni Stepanek – An MDA national vice president, Jeni Stepanek of Rockville, Md., will once again appear on the Telethon. Stepanek is the mother of the late Mattie J.T. Stepanek, best-selling poet and MDA National Goodwill Ambassador. She has an adult-onset form of mitochondrial myopathy, the disease that claimed Mattie and her other three children. Stepanek often speaks publicly to carry forward her son’s mission seeking peace, hope and an end to neuromuscular diseases. Mattie’s sixth and final volume of poetry, Reflections of a Peacemaker: A Portrait Through Heartsongs, was released last year. A second book, Just Peace: A Message of Hope, a collection of essays and correspondence between Mattie and President Jimmy Carter, hit stores in March. Stepanek recently moved into a new house facing the 26.2-acre Mattie J.T. Stepanek Park, dedicated earlier this year by the city of Rockville. Stepanek is an author, Ph.D. candidate and faculty research associate at the University of Maryland in Baltimore, studying early childhood special education.
Abbey Umali – 2006 MDA California Goodwill Ambassador, Abbey Umali, 7, of Redlands, Calif., has Dejerine-Sottas disease, a neurological disorder characterized by muscle wasting, lack of coordination and some loss of sensation in upper and lower extremities. She’s ambulatory with braces. Abbey attends various events with her family to speak on behalf of the Association. She’s a second-grader at Loma Linda Academy who loves swimming, riding her bike, singing and playing the piano.
Bradley Walker – Country music singer Bradley Walker, 28, of Athens, Ala. will perform live on the national broadcast of the Telethon. In 1989, Walker was profiled on the Telethon, and performed on the show in 2001 and 2002. He has nemaline myopathy, a metabolic muscle disease. Walker uses a power wheelchair for mobility. He’s a fixture in the bluegrass community, and has performed at the Grand Ole Opry and was hailed as the “next great voice of bluegrass music” by Bluegrass Unlimited magazine in September 2005. Walker’s debut album, “Highway of Dreams,” is due out Sept. 12 from Rounder Records.
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