My Turn: Battling for an ALS Cure | Newsweek My Turn

Brain Boosters
6/27/2009 12:00:00 AM
Daryl Kipke is showing off his company's latest prototype, a state-of-the-art electronic chip. It's not the sort likely to end up powering your iPod, but it does produce a beat you won't be able to get out of your head—because this device is designed to be surgically implanted deep in your brain, where the chip will deliver electric signals to specific clusters of cells. Kipke's firm, NeuroNexus Technologies in Ann Arbor, Michigan, is developing and testing the device to deliver electric pulses that can relieve some of the symptoms of Parkinson's disease, obsessive-compulsive disorder, and depression. "Deep-brain stimulation has been poorly understood," says Kipke, who is also a University of Michigan neuroscientist. "But with this technology we can improve neuron targeting and tuning."
A Winning Pitch: An Update to Our Nov. 10, 2008, My Turn
Mark Starr 6/27/2009 12:00:00 AM
It's been three years since Michael Goldsmith received what he calls his "death sentence": a diagnosis of ALS, also known as Lou Gehrig's disease. In recent months, Goldsmith has seen the paralyzing muscular disorder, which has no cure, progress rapidly. His speech is impaired, and he's more reliant on a wheelchair.
From Bench To Bedside
Sharon Begley 6/5/2009 12:00:00 AM
NIH has its work cut out for it, for the forces within academic medicine that (inadvertently) conspire to impede research aimed at a clinical payoff show little sign of abating. One reason is the profit motive, which is supposed to induce pharma and biotech to invest in the decades-long process of discovering, developing and testing new compounds. It often does. But when a promising discovery has the profit potential of Pets.com, patients can lose out. A stark example is the work of Donald Stein, now at Emory University, who in the 1960s noticed that female rats recovered from head and brain injuries more quickly and completely than male rats. He hypothesized that the pregnancy hormone progesterone might be the reason. But progesterone is not easily patentable. Nature already owns the patent, as it were, so industry took a pass. "Pharma didn't see a profit potential, so our only hope was to get NIH to fund the large-scale clinical trials," says Stein. Unfortunately, he had little luck getting NIH support for his work (more on that later) until 2001, when he received $2.2 million for early human research, and in October a large trial testing progesterone on thousands of patients with brain injuries will be launched at 17 medical centers. For those of you keeping score at home, that would be 40 years after Stein made his serendipitous discovery.
LETTERS
A Call to Arms in the Epilepsy Fight
4/25/2009 12:00:00 AM
'The Mystery of Epilepsy': Readers hailed our April 20 cover story on epilepsy, a devastating, and often misunderstood, disorder. A teenager confessed to feeling "now more understood and most importantly, more normal." While others related tales of triumph and tragedy, all underscored the need for increased funding and research. As for the stigma factor, one reader admitted to "only recently coming out of the closet." One mom said it best: "My daughter has more spunk and courage than a combat unit. She also happens to have epilepsy."
HEALTH
Agony, Hope & Resolve
4/11/2009 12:00:00 AM
Twenty-three mind-numbing medications. Brain stimulation. Special diets. Countless hospitalizations, emergency-room visits and procedures. Drug-induced comas to temporarily halt relentless, brain-damaging and life-threatening clusters of seizures. This describes the first 18 years of my daughter's life. One night, when she was just 7 months old, I put Lauren to sleep in her crib. The next morning I found her blue and limp—the result, I was soon to discover, of a night filled with seizures. Seizures that defied explanation, resisted treatments and have defined her life ever since. All I wanted, from that day on, was to be able to make the seizures stop. But that goal remained elusive. She could have 25 or more seizures a day. She would wake up after a seizure just long enough to feel the next one coming on and scream out in terror, begging me, "Mommy … NO … make it stop…" I never could. As all parents know, your child looks to you to explain the world, help put things in order and to make things better. There is nothing worse than seeing that look of terror in your child's eyes when you are completely helpless to make things better. When she was 15, Lauren underwent a seven-hour neurosurgical procedure, which, at the time, was our last hope. Surgeons bored holes in her skull and implanted electrodes directly onto the surface of her brain in an attempt to pinpoint the area responsible for the seizures, in hopes of being able to surgically remove it.
A Big Break In Lou Gehrig's Disease

ALS strikes 5,000 Americans each year. The disease involves the progressive death of motor neurons, the nerve cells that transmit impulses from the brain and spinal cord to the muscles. As the condition advances, sufferers lose the ability to speak, swallow or breathe. Though a few survive 20 years or more (as the British astrophysicist Stephen Hawking has), most die within five years.