MDA/ALS Newsmagazine Vol. 13, No. 7

July-August 2008

Cover Story

It’s not just about text-to-speech devices anymore
Alternative augmentative communication (AAC) devices have come a long way since the early days. Now people with ALS can obtain speech-generating devices that provide more than basic text-to-speech output. All-in-one, or “integrated” communication solutions offer seamless access to e-mail, Internet...

Features

When Jerry DeZutter first came to the ALS Therapy Development Institute in 2005, meetings focused on “frank and open discussions about the life of the institute — whether it would survive,” he says. DeZutter, now head of the in vitro (test tube) validation group at this MDA-supported institut...
After remodeling (above), a wheelchair ramp ascends to a home’s threshold level. Remodeling living quarters to make them more accessible is one way to “stay ahead” of ALS. Modifications can be simple, such as lowering light switches, replacing doorknobs with levers, elevating toilets and...
Author Jeff Lester’s daughter, Kelsey, is shown here helping out with his trach care. The family discovered communicating this and other vital procedures to the temporary nurses was not an easy task. When you’ve been dealing with ALS for nearly 15 years, you assume you’ve dealt with everyth...
Summer typically is the time when people head out and enjoy the great outdoors. But people with ALS have to take a few extra precautions during these hot months, warns Lora L. Clawson, certified registered nurse practitioner and director of ALS clinical services at the MDA/ALS Center at Johns Hopkin...
Despite ALS, Lorri Coppola continues to train, walking a mile a day, three days a week, usually at the College of Marin close to her Greenbrae apartment. Photo by Shirley Pierce. Lorri Coppola learned in 2005 she has bulbar-onset ALS. Although the disease has stripped away her ability to sp...
Popular television host Nancy O’Dell is partnering with MDA’s ALS Division to raise awareness and funds for ALS research, in response to her mother’s battle with the disease. O’Dell’s mother, Betty Humphries, 74, learned she had ALS in November and died in early June. O’Dell is currently in h...
MDA is urging Congress to pass legislation protecting the benefits of Americans with severe physical disabilities by exempting certain types of assistive technology from a restrictive new Medicare policy that went into effect this summer in 10 major metropolitan areas, says Annie Kennedy, MDA vic...

Research Roundup

Gene therapy experts discuss targeting ALS-affected cells The 11th annual meeting of the American Society of Gene Therapy (ASGT) took place in Boston May 28-June 1. Among the dozens of sessions was an MDA-sponsored program on gene therapy for neurodegeneration. Kenneth Fischbeck from the National...

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