Movement of the Ball Forward …
My Dad sent me this article today and I thought I would share it as a new post on my Blog. This article really gave me some hope and relief as well (what I would typically call “forward movement of the ball toward the goal line”). It is a good feeling to actually know there are folks in this world working very hard on this ALS “problem” and coming up with innovative processes and tools that are going to help alot of people perhaps in the near term.
Given this article - I am now hoping that my physicians will use this “Tracker” technique/tool as a reliable way to baseline & quantify the small muscular changes in Tom Murphy’s muscles that signal progressive deterioration and maybe even the rate of this deterioration. As of today, no one seems to be able to tell me whether this disease is progressing “fast” or “slow” — only that “everyones progression is different”.
I also found the links below to Patient Voices: A.L.S below (Interactive Media) to be very moving to listen to due to the many different perspectives and situations that these folks find themselves in - you may also find these vignettes educational as well as moving.
$1 Million to Inventor of Tracker for A.L.S.
By BINA VENKATARAMAN
Published: February 3, 2011
BOSTON — Tracking the inexorable advance of amyotrophic lateral sclerosis, the deadly neuromuscular ailment better known as Lou Gehrig’s disease or A.L.S., has long been an inexact science — a matter of monitoring weakness and fatigue, making crude measurements of the strength of various muscles.
This imprecision has hindered the search for drugs that could slow or block the disease’s progress. But now a neurologist at Beth Israel Deaconess Medical Center here has won a $1 million prize — reportedly the largest ever for meeting a specific challenge in medical research — for developing a reliable way to quantify the small muscular changes that signal progressive deterioration.
The winner, Dr. Seward Rutkove, showed that his method could halve the cost of clinical trials to screen potential drugs for the disease, said Melanie Leitner, chief scientific officer of Prize4Life, the nonprofit group that created the competition.
The method does not provide a target in the body at which to aim drugs, nor will it help doctors better diagnose the disease. But Dr. Merit Cudkowicz, a professor of neurology at Massachusetts General Hospital and a chairwoman of the Northeast A.L.S. Consortium, compared Dr. Rutkove’s discovery to the way magnetic resonance imaging expedited the development of drugs for multiple sclerosis.
“You can use this as a tool to screen drugs to see if they will affect survival,” she said, but added, “The ultimate prize is finding a drug that works for A.L.S.”
Dr. Rutkove, 46, who has been treating patients with neuromuscular disease for 16 years, took advantage of the way our muscle fibers change electrical currents. With a hand-held device hooked up to electrodes on the patient’s skin, a doctor can send a painless electrical current into a given muscle, then measure the voltage that results.
As A.L.S. spreads, motor neurons die off, causing muscles to atrophy. The deteriorating muscles behave differently from healthy ones, resisting the current more. In studies of humans as well as rats, Dr. Rutkove showed that these variations were closely correlated with disease progression and length of survival.
“It’s not like it’s the fanciest technology,” he said. “But I truly believe it will help people.”
Dr. Rutkove was inspired to become a doctor when, as a child, he watched his grandfather have an epileptic seizure.
Each year, doctors diagnose about 5,000 new cases of A.L.S. in the United States, according to the National Institutes of Health. Despite decades of clinical trials, the diagnosis remains a death sentence. It paralyzes and suffocates patients while their minds remain intact.
A few patients live for decades — the physicist Stephen Hawking is the best known — but most survive only three to five years after symptoms appear. And riluzole, the only A.L.S. drug approved by the Food and Drug Administration, costs about $10,000 a year and typically extends life by just a few months.
The high cost of clinical trials limits drug companies’ ability to test potential treatments. Researchers must recruit hundreds of patients and run trials that last as long as two years just to eliminate a drug from the running.
“One executive told us, ‘For the cost of one A.L.S. drug I can develop two multiple sclerosis drugs, so obviously I go with M.S.,’ ” wrote Avi Kremer, the 35-year-old founder of Prize4Life. Mr. Kremer, who has the disease himself (he was given the diagnosis in 2004, while a student at Harvard Business School), cannot speak or type. He made the remark during a Skype video chat from his apartment in Haifa, Israel, using a sensor that tracks his forehead as he lifts his eyebrows.
Dr. Doug Kerr, associate director of experimental neurology at Biogen Idec, which is working on an A.L.S. drug, said more sensitive testing methods “will allow us to test more drugs, more patients, and get an answer earlier.” He called Dr. Rutkove’s method “a powerful new part of the armament to study A.L.S.”
Researchers say the $1 million prize, to be presented to Dr. Rutkove in June in New York, is the largest ever for solving a prescribed challenge in medical research. (The Nobel and Lasker awards are given retrospectively, rather than in response to a challenge.)
This kind of prize is hardly new. In the 18th century, such a challenge spurred a solution to Newton’s famous problem of how to determine longitude at sea. (A clockmaker, John Harrison, won the competition by inventing the marine chronometer.) And Charles Lindbergh’s nonstop flight across the Atlantic was prompted by a competition, the $25,000 Orteig Prize.
Now these sorts of challenges are coming back into fashion. In December, Congress passed a law authorizing federal agencies to use prize competitions as a complement to grants and contracts.
Competitions can draw new eyes to old problems; among the Prize4Life contestants was a dermatologist from Buffalo who sought a skin-based biomarker for A.L.S. after he noticed that patients with the disease did not get bedsores.
The danger of a prize competition, though, is that “if you make the wrong choices, you might be leading people in the wrong direction, or to an R. & D. cul-de-sac,” said Paul A. Wilson, a professor at the Mailman School of Public Health at Columbia University. Dr. Wilson has studied the potential of using a prize to encourage development of a tuberculosis diagnostic tool cheap and simple enough to use in rural Africa.
Dr. Rutkove said his work had been under way, and supported by public financing, before he heard of the prize. But he added that the challenge turned his focus toward reducing the cost of clinical trials and sped up his analysis.
The lure of a prize competition is that it can set off a race to achieve what is just beyond reach.
“It is not unlike President Kennedy succinctly challenging us to put a man on the Moon,” said Dwayne Spradlin, chief executive of InnoCentive, a matchmaking company for problem solvers and seekers of solutions that helped promote the Prize4Life contest.
For A.L.S. patients like Mr. Kremer, of course, the biggest challenge remains: to survive.