May 31, 2008
Lorenzo Odone ('Lorenzo's Oil) Dies
He passed away yesterday at his home in Fairfax County, Virginia.
Here's Martin Weil's obituary from today's Washington Post.
- Lorenzo Odone, 30; Struggle Inspired 'Lorenzo's Oil'
Lorenzo Odone, 30, whose story of illness, impairment and the determined effort by his parents to save his life were depicted in the 1992 movie "Lorenzo's Oil," died yesterday at his home in Fairfax County.
His father, Augusto Odone, said that Mr. Odone apparently died of aspiration pneumonia, which can result from a foreign material inhaled into the lungs.
Mr. Odone had been severely disabled by a genetic disease known as adrenoleukodystrophy, or ALD. The rare ailment principally afflicts males and usually results in brain failure and death.
Augusto Odone said last night that his son had always been brave and that "everyone who knew him was crying at his death."
He emphasized that his son's death was "not the result of the disease."
In an interview last night, Augusto Odone said that an article in a scientific journal asserts that if the treatment is given before symptoms develop, children can escape the effects of the disease.
The discovery came too late for Mr. Odone, who was condemned to silence by what appeared to be the irreversible neurological effects of the disease.
After Mr. Odone's condition was diagnosed more than 20 years ago, his parents learned that children typically lived only a few years after diagnosis. They declined to accept that fate for their son and began searching for a treatment.
The treatment they devised came after hours of poring over obscure scientific journals and obtaining the counsel of many specialists. Although some experts said that the oil might be dangerous, the parents, noting their son's rapid deterioration, decided to take a chance. Augusto Odone credited his son's years of survival to the treatment.
Mr. Odone's mother, Michaela, who joined her husband and nurses in providing their son with constant care, died in 2000.
Augusto Odone said last night that he intended to have Lorenzo cremated so his ashes could be mixed with his mother's.
In addition to Mr. Odone's father, survivors include a brother and a sister.
Here's a link to the 2005 Archives of Neurology paper concluding that Lorenzo's oil is effective in preventing the effects of ALD if it is given before symptoms develop.
The Odone family was instrumental in creating The Myelin Project to advance research and education in demyelinating diseases such as ALD.
Outdoor Pool Table — Because sometimes when you're camping, toasting marshmallows over the campfire just doesn't cut it
From the website:
- Outdoor Pool Table
This regulation, weather-resistant Outdoor Pool Table takes outdoor entertaining to a new level.
Work on your game while you soak up the sun or play in the rain if you'd like — weather-tolerant materials and construction provide durability in any climate.
• Game table frame and cabinet made of UV- and water-resistant high-tech composite
• Bed is a single piece of genuine 3/4" diamond-ground Brazilian slate
• Sunbrella® acrylic fabric bed cloth remains colorfast
• Resists stains, mildew, or any kind of deterioration
• Table cleans up beautifully with soap and water
• Included: ball set, four all-weather two-piece composite cues, triangle, table brush, chalk and table cover
• Set up the table for buffets with included foam inserts
• Two-person, 45-minute assembly to attach legs
• 6"W x 30.5"H x 100"L.
• 687 lbs.
Sapporo 'Space Beer' To Arrrive This Year
Look at the photo above.
What do you see?
It's Elena Shaginardanova, a Russian student at Japan's Okayama University, photographed in Tokyo last Tuesday holding a bunch of barley grown from "... a third generation of barley grains that spent five months on the International Space Station in 2006."
In yesterday's PopSci.com story, Jaya Jiwatram wrote, "The company only has enough barley to make 100 bottles of beer this fall and they will not be sold commercially."
Here's the article.
- Japanese Brewery Introduces 'Space Beer'
Taking beer-making to a whole new sphere, Japan's famous Sapporo Holdings Ltd. plans to launch a beer in November that's literally from out of this world. The brewery will collaborate with scientists at the Okayama University in Japan to concoct this unearthly beverage from a third generation of barley grains that spent five months on the International Space Station in 2006.
Does the barley taste any different? Apparently, no. In fact, scientists have not found a difference in the genetic make-up of the earth-grown and space-grown barley yet, according to Manabu Sugimoto, an Okayama University biologist who has been part of a Russian project to investigate growth methods for edible plants in space.
Bar crawlers will have to wait to get their hands on this enticing beverage, though. The company only has enough barley to make 100 bottles of beer this fall and they will not be sold commercially. It may be a while before the Sapporo brew hits taps, but when that day comes, one can only hope there are space nuts to go with it.
More here in Mari Yamaguchi's MSNBC story on the exotic brew-to-be.
Anglepoise Fifty — The lamp that asks, 'Where's the rest of me?'
Designed by Anthony Dickens.
"The inspiration came from the original Anglepoise® lamp and the idea then came to freeze it at fifty degrees, cast it like an old archeological relic, strip it of production complexity and shape it into something new which still retained a functionality and personality but added a heightened playfulness to appeal to younger audiences."
• Inline switch
• Cable length 2m
• Fixed in one position
• Single piece moulding
• 33.3cm H x 30cm W x 14.5cm D
• 25W globe ball (will take up to 40W)
Orange, Red or Clear.
BehindTheMedspeak: Obecalp — Episode 2: The Rise of the Placebo Effect
I have no one to blame but myself for not following up my November 2, 2004 post about Obecalp — placebo spelled backward — with a concerted marketing push to capitalize on the placebo effect.
Christie Aschwanden's May 27, 2008 New York Times article has the details, and follows.
- Experts Question Placebo Pill for Children
Jennifer Buettner was taking care of her young niece when the idea struck her. The child had a nagging case of hypochondria, and Ms. Buettner’s mother-in-law, a nurse, instructed her to give the girl a Motrin tablet.
“She told me it was the most benign thing I could give,” Ms. Buettner said. “I thought, why give her any drug? Why not give her a placebo?”
Studies have repeatedly shown that placebos can produce improvements for many problems like depression, pain and high blood pressure, and Ms. Buettner reasoned that she could harness the placebo effect to help her niece. She sent her husband to the drugstore to buy placebo pills. When he came back empty handed, she said, “It was one of those ‘aha!’ moments when everything just clicks.”
Ms. Buettner, 40, who lives in Severna Park, Md., with her husband, 7-month-old son and 22-month-old twins, envisioned a children’s placebo tablet that would empower parents to do something tangible for minor ills and reduce the unnecessary use of antibiotics and other medicines.
With the help of her husband, Dennis, she founded a placebo company, and, without a hint of irony, named it Efficacy Brands. Its chewable, cherry-flavored dextrose tablets, Obecalp, for placebo spelled backward, goes on sale on June 1 at the Efficacy Brands Web site. Bottles of 50 tablets will sell for $5.95. The Buettners have plans for a liquid version, too.
Because they contain no active drug, the pills will not be sold as a drug under Food and Drug Administration rules. They will be marketed as dietary supplements, meaning they can be sold at groceries, drugstores and discount stores without a prescription.
“This is designed to have the texture and taste of actual medicine so it will trick kids into thinking that they’re taking something,” Ms. Buettner said. “Then their brain takes over, and they say, ‘Oh, I feel better.’ ”
But some experts question the premise behind the tablets. “Placebos are unpredictable,” said Dr. Howard Brody, a medical ethicist and family physician at the University of Texas Medical Branch at Galveston. “Each and every time you give a placebo you see a dramatic response among some people and no response in others.”
He added that there was no way to predict who would respond.
“The idea that we can use a placebo as a general treatment method,” Dr. Brody said, “strikes me as inappropriate.”
Ms. Buettner does not spell out the conditions that her pills could treat. As a parent, she said, “you’ll know when Obecalp is necessary.”
Franklin G. Miller, a bioethicist at the National Institutes of Health, is skeptical. “As a parent of three now grown children,” he said, “I can’t think of a single instance where I’d want to give a placebo.”
Much of the power of the placebo effect seems to lie in the belief that it will work, and some experts question whether this expectation can be sustained if the person giving it knows it is a sham.
Most clinical trials that have shown benefits from placebos are double blinded. Neither the recipient nor the giver knows that the pills are fake.
“For this to work really well as placebo, you cannot let the parents know that it’s a sugar pill,” Dr. Brody said. “You have to lie to the parents, too, if you expect them to fool their kids.”
At least one study has shown that placebos can be effective even when the patients know that they are inert. In a study in 2007, 70 children with attention deficit hyperactivity disorder were asked to reduce their medications gradually by replacing some of their drugs with placebo pills. The children and their parents were explicitly told that these “dose extender” pills contained no drug.
After three months, 80 percent of the children reported that the placebo had helped them. Although that study used a placebo in a different context from Obecalp, it did suggest that deception might not be necessary for a placebo to work, said the senior author, Gail Geller, a bioethicist at the Berman Institute of Bioethics at Johns Hopkins.
Even if Obecalp proved helpful, some doctors worry that giving children “medicine” for every ache and pain teaches that every ailment has a cure in a bottle.
“Kids could grow up thinking that the only way to get better is by taking a pill,” Dr. Brody said. If they do that, he added, they will not learn that a minor complaint like a scraped knee or a cold can improve on its own.
Dr. David Spiegel, a psychiatrist who studies placebos at the Stanford School of Medicine, said conditioning children to reach for relief in a pill could also make them easy targets for quacks and pharmaceutical pitches later. “They used to sell candied cigarettes to kids to get them used to the idea of playing with cigarettes,” he said.
Ms. Buettner acknowledged that “we expect controversy with this,” but she added, “We are not promoting drug use.”
Despite his misgivings, Dr. Brody predicted that Obecalp would entice many parents. “Anybody who has ever been up in the middle of the night with a crying child would be tempted to try something like this,” he said. “You’re so desperate for anything that could quiet down your poor, miserable kid.”
Doctors themselves have been known to dole out placebos to overwhelmed parents, said Dr. Brian Olshansky, a physician at the University of Iowa Hospitals. A screaming child with an earache may leave the emergency room with a prescription for antibiotics, even though the drug will not speed recovery and could potentially cause harm.
Ms. Buettner said her pill could satisfy that need while reducing potential harms from unnecessary medications. “The overprescription of drugs is a serious problem, and I think there needs to be an alternative,” she said.
Some experts question whether an alternative should involve deception. “I don’t like the idea of parents lying to their kids,” said Dr. Steven Joffe, a pediatrician and bioethicist at the Dana-Farber Cancer Institute in Boston. “It makes me squeamish.”
Dr. Geller, the bioethicist, agrees that parents should not deceive their children. But she added that a parent who truly believed in the power of the placebo was not really being deceptive. “In principle,” she said, “I don’t have a problem with the thoughtful use of placebo. The starting premise and your own belief about what you’re doing matters a lot.”
Dr. Brody said parents did not need a pill to induce the placebo effect. Mothers have long promised to “kiss it and make it better” and it is that type of placebo children really yearn for, he said.
“Does a sick child really want X-rays or M.R.I.’s or the latest antibiotic?” he asked. “No. All the sick child wants is comforting.”
50 cherry-flavored chewable tablets cost $5.95.
Jason Maloney x Hurley
Summer '08 boardshort from the edgy artist.
Njection.com: Find speed traps — before they find you
Before you get your baggies in a twist about how counterproductive this website is in terms of auto safety, consider this (from Shannon Atkinson, founder and president of Njection), the concluding paragraph of Sharkey's piece: "We actually hear from police officers about where they hang out on such and such days and times — because what they’re mostly interested in is getting people to drive safely,” he said."
Galactic Shield! — 'Blitz that untimely zit!'
- Galactic Shield! — Blitz that untimely zit!
Conceal, shield and heal blemishes with this oil-free, waterproof, anti-acne concealing stick.
In two shades to match your complexion (not your boo boo), this concealer is your daytime avenger.
Apply directly on affected area... then, HANDS OFF!
In one swoop this precision concealing wand with salicylic acid will hide it and heal it.
• 2007 Allure Editor's Choice Award for Best Concealer for Blemishes
• Received Elle magazine's Top 5 Winner "Spot-on Blemish Eraser" Award
• Voted "Best Concealer for Acne" by Real Simple magazine
• Slim-line and portable for mid-day touchups
• 0.28 g net wt (0.01 oz.)
• Contains 2% salicylic acid, an anti-bacterial agent that helps to treat existing and prevent new blemishes from forming
• Also contains chamomile and aloe vera to heal, calm and reduce redness and inflammation
Two shades: Medium or Dark.