ALSN Vol. 17, No. 1

For Pat Dwyer, this newly approved respiratory assist device means 'a life better lived,' but physicians urge caution until more is known

Posted on Tuesday, January 3, 2012 - 09:49, By: Amy Madsen
Pat Dwyer of Kenmore, Wash., uses three different devices to make sure he’s getting enough air. A “sip-and-puff” ventilator supplements his breathing efforts during the day; bilevel positive airway pressure (BiPAP) helps him breathe at night; and the NeuRx Diaphragm Pacing System, or DPS,...
Posted on Sunday, January 1, 2012 - 12:00, By: ALSN Staff
Dexpramipexole shows efficacy in ALS Newly published data confirm that in a two-part phase 2 clinical trial, the experimental therapy dexpramipexole showed dose-related slowing of symptom progression and increased survival time in people with ALS.

What do they mean, and why do they matter?

Posted on Sunday, January 1, 2012 - 12:00, By: Amy Madsen
One of the first things that comes with a diagnosis of ALS is the determination of which “form” a person has: familial or sporadic. Sometimes it appears obvious. If there’s a known history of the disease “running in the family,” then the person is said to have familial, or inherited, ALS. If the...

New training teaches individuals and families how to advocate for ALS research

Posted on Sunday, January 1, 2012 - 12:00, By: Freelance
Fight smart, not just hard. That’s the motto of Richard Bedlack, a world-renowned ALS research warrior who directs the ALS Clinic at Duke University, Durham, N.C. “Everyone I’ve ever met who is affected by ALS wants to roll up their sleeves and do something about it,” he says.