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Manchester youth finds hope with MDA

A spirit of excitement filled the air in the Oak Room of the Cedar Rapids Marriott this past weekend as the local coverage of the Jerry Lewis Muscular Dystrophy Association (MDA) telethon was in full swing. 2010 marks the 44th anniversary for the MDA Telethon, an event used to raise awareness and funds for research and assistance for those affected by over 40 neuromuscular diseases.


With its new campaign, “Make A Muscle, Make A Difference,” this year’s telethon raised nearly $60 million nationally. “We’re giving a new meaning to one of the world’s most powerful gestures," explains MDA President & CEO, Gerald C. Weinburg, "The symbolism of flexing a bicep to help people with muscle-damaging diseases is powerful."


This powerful symbolism carried through to local broadcasting stations in their coverage of the MDA Telethon. Among those flexing a bicep for KGAN CSB2 were Herky the Hawkeye, area firefighters, and local Harley Davidson chapter members. With approximately 20 people answering phones and many production crew members holding down the fort, an additional group of visitors cheered on the cause, many of whom were diagnosed with a neuromuscular disease.


Most noted was Travis Krapfl, 15, of Manchester. Krapfl, MDA’s local goodwill ambassador, has a diagnosis of merosin-deficient congenital muscular dystrophy (CMD), a neuromuscular disease characterized by general muscle weakness and joint contractures. Using a power wheelchair full-time, Krapfl lets nothing slow him down, as seen by his social nature and quick witted humor (he proudly displays a “Chick Magnet” bumper sticker on the back of his wheelchair).


Diagnosed as an infant, he has spent his life adapting to the various challenges facing a child with neuromuscular disease, including feeding tubes and respiratory assistance. Along the way, he has found benefits in the programs offered by MDA. One of his favorite summer activities for the past nine years has been attending MDA summer camp, a free one-week adventure offered to children ages 6-17 registered with the MDA. Camp offers the independence so many children with neuromuscular diseases desire, while offering the security and medical care parents know is needed. Donations to the annual telethon make funding for this experience possible.


“I like seeing my friends!” Krapfl says enthusiastically. When asked by KGAN CSB2’s Jared Aarons what he enjoys most, Krapfl responded with,“I like the zip line.” During this exciting week, campers enjoy the thrills of horseback riding, fishing, swimming, karaoke competitions, and – yes – riding the zip line.


In addition, campers make life-long friends. Present at this year’s Cedar Rapids telethon were two of Krapfl’s camp friends. “We all went to camp together!” he says joyfully. There is nothing like the friendship shared between MDA campers. Daily life all too easily points out the hindrances of having such obvious disabilities, while camp offers relief and hope for a future. “Camp is a great way to feel like just another regular kid,” Aaron told his television audience, after relaying his story of spending time at this year’s camp in Monticello.


MDA is working hard to make these children’s futures brighter. Among its many services, MDA funds flu shots, annual neurological clinics, wheelchair assessments, and prosthetic devices, most of which are not affordable for families with such needs.


The most expensive service for MDA itself is the in-depth daily research. Every minute, MDA spends $74 on research for kids like Krapfl. It is the past successes and future hopes that keep the researchers focused, flexing their own biceps for this great cause.


Little is known about the long-term effects of merosin-deficient CMD, but with the help of MDA there is reason to be positive. Krapfl has a hope-filled future planned, including attending the University of Northern Iowa (UNI), majoring in elementary education, and learning to drive an adapted vehicle. “I want to drive something like that,” he says, pointing to a nearby pickup truck. Despite his needs for assistance, there is one thing known for sure. No minivans for Krapfl.


For more information on how you can help and to learn more about the diseases covered by MDA, visit www.mdausa.org or visit its current auction site.


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