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Rare Disease

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CALIFORNIA | LOCAL
November 15, 2006 | Dennis McLellan, Times Staff Writer
Florence "Rusty" Tullis, the strong-willed biker mother of a son with a rare disfiguring disease, who was portrayed by Cher in the 1985 movie "Mask," has died. She was 70. Tullis died of an infection Saturday at Beverly Hospital in Montebello about a month after being injured in a motorcycle accident, her niece, Helen Cunningham, said Tuesday. Tullis was driving a three-wheeled motorcycle through an intersection in Azusa on Oct.
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SPORTS
January 4, 2013 | Bill Dwyre
Incredible things happened in the world of pro golf in 2012. --Bubba Watson won the Masters with a shot on the second playoff hole that only a magician or a contortionist could pull off. --Brendt Snedeker won $11.13 million in one day by taking the final FedEx Cup event. --Charlie Beljan didn't die during the second round of the Children's Miracle Network tournament at Disney World. "I was pretty sure," Beljan says now. "I feared for my life. I guess that's the way I am — prepare for the worst and hope for the best.
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SCIENCE
July 20, 2012 | By Thomas H. Maugh II, Los Angeles Times
The long-frustrated field of gene therapy is about to reach a major milestone: the first regulatory approval of a gene therapy treatment for disease in the West. The European Medicine Agency's Committee for Medicinal Products for Human Use said Friday that it is recommending approval of Glybera, a treatment for lipoprotein lipase deficiency manufactured by uniQure of Amsterdam. The European Commission generally follows the recommendations of the agency, and if it does so this time, the product could be available in all 27 members of the European Union by the end of the year.
SCIENCE
October 31, 2012 | By Eryn Brown, Los Angeles Times
Scientists are one step closer to unraveling how variations in the human DNA and may influence the incidence of disease. On Wednesday, researchers reported the latest results from the 1000 Genomes Project,  a large international collaboration that seeks to map out human genetic variation, in the journal Nature. Sequencing DNA from 1,092 people from 14 populations (including Europeans, East Asians, Sub-Saharan Africans and people from the Americas) they identified 38 million DNA variants in the genome - the collection of 6 billion DNA letters that form the biological blueprint for a person.  Having such a “dense catalog” of DNA variants should help researchers figure out what genetic variations correlate with disease, said Carlos Bustamante, a geneticist at Stanford Medical School and a participant in the project.  In the future, when researchers sequence the genome of a person with, say, diabetes, they'll be able to compare the variations they find in that subject's DNA to the 1000 Genomes reference genomes to do a sort of “first-level check” - to begin to figure out if a particular genetic difference is or isn't the cause of the disease.
SPORTS
August 15, 1991 | ELLIOTT ALMOND, TIMES STAFF WRITER
Rowdy Gaines, one of the swimming stars of the 1984 Olympics who last month set a master's world record in the 100-meter freestyle, has been struck with a rare disease of the nervous system and is in guarded condition in a Honolulu hospital. Gaines, 32, is undergoing treatment for Guillain-Barre Syndrome, a neurological paralytic disorder of unknown cause, his mother Jettie said Wednesday night from Hawaii.
NEWS
October 8, 2010
Chronic granulomatous disorder generally isn't on anyone's medical radar. The disease is  characterized by a flawed bone marrow gene that interferes with the ability of some white blood cells to kill off fungi and bacteria. More succinctly, it's an immune deficiency disorder that can kill. The disease is rare, affecting 1 in 4 million people. Ten-year-old Michael Stolzenberg of Weston, Fla., is one of the unlucky few. South Florida Sun-Sentinel columnist Dave Hyde provides a look at this uncommon disorder and Stolzenberg's uncommon life in "Boy lost his limbs, but kept his spirit and his football.
NEWS
February 10, 2011 | By Mary Forgione, Tribune Health
A Colorado teen with a rare neurological disease wants to do two things: Take the medical marijuana he needs to control his seizures and attend high school. Sounds simple, but, of course, it's anything but. The drama playing out between the student and the school likely has little to do with the boy's disease -- described as diaphragmatic and axial myoclonus -- and more to do with the zero-tolerance policy regarding medical marijuana. The Colorado Independent reported that the teen, whose name was not released, has been prescribed marijuana lozenges to control attacks that come on without warning.
NEWS
June 19, 1985 | Associated Press
The House on Tuesday approved and sent to President Reagan a bill strengthening incentives for research and production of drugs for rare diseases. The legislation, passed on a 413-0 vote, is designed to encourage drug companies to produce so-called orphan drugs, medication that fights diseases too rare for the drugs to be profitable. The bill protects developers of orphan drugs for seven years by not allowing competitors to produce the same drug for the same rare disease.
CALIFORNIA | LOCAL
November 24, 1994 | YVETTE CABRERA, TIMES STAFF WRITER
Six years ago, he was like any other 14-year-old boy, tossing a football with friends and preparing for the high school freshman team. Then the symptoms began. He became fatigued, developed a rash, lost weight and suffered severe muscle pain. Soon, he couldn't walk, and his condition was diagnosed as juvenile dermatomyositis, a rare inflammatory disease of the muscles and skin. Now, Ben Malagon is on his feet again, having walked a short distance for the first time in years only last week.
NEWS
January 17, 1986 | United Press International
U.S. intelligence reports say that Philippines President Ferdinand E. Marcos, in the midst of a reelection campaign, is seriously ill with a cyclical, "potentially fatal" rare disease complicated by diabetes, well-informed sources said today. According to the U.S. intelligence assessment, Marcos is suffering from a periodic form of lupus, a disease in which antibodies attack the body's own tissues, including such organs as the kidneys. The U.S.
NEWS
August 31, 2012 | By Kate Mather
YOSEMITE NATIONAL PARK -- A new nationwide advisory issued Friday by the Centers for Disease Control and Prevention said that as many as 10,000 people were at risk for contracting hantavirus after staying in Yosemite National Park this summer. Park officials said Friday that they had sent letters and emails to about 3,100 people who reserved one of the 91 "signature tent cabins" in the park's popular Curry Village between June 10 and Aug. 24. The CDC alert - issued through its health advisory network, which reaches healthcare providers as well as health departments - said that an estimated 10,000 people stayed in the tents during that time.
SCIENCE
July 20, 2012 | By Thomas H. Maugh II, Los Angeles Times
The long-frustrated field of gene therapy is about to reach a major milestone: the first regulatory approval of a gene therapy treatment for disease in the West. The European Medicine Agency's Committee for Medicinal Products for Human Use said Friday that it is recommending approval of Glybera, a treatment for lipoprotein lipase deficiency manufactured by uniQure of Amsterdam. The European Commission generally follows the recommendations of the agency, and if it does so this time, the product could be available in all 27 members of the European Union by the end of the year.
NATIONAL
May 17, 2012 | By Rene Lynch
The rare disease commonly known as flesh-eating bacteria has claimed another victim: a South Carolina woman who had just given birth to a healthy set of twins and who noticed an unusual spot on the back of her leg. Lana Kuykendall, 36, is a paramedic, and her profession might have helped save her life. She recognized the spot as something to be concerned about -- perhaps a blood clot -- and promptly sought medical help. She has undergone four surgeries so far to remove dead flesh as doctors scramble to keep one step ahead of the disease formally known as necrotizing fasciitis. So far, Kuykendall has not suffered any limb amputations -- often a devastating result of the disease.
NEWS
August 15, 2011 | By Amina Khan, Los Angeles Times / for the Booster Shots blog
The deadly brain parasite thought to be responsible for the death of Florida teen Courtney Nash is as rare as it is dangerous. Tragically, it's also easily avoidable. The 16-year-old began suffering from headache, stiffness, fever and nausea within a week after going for a swim on Aug. 3 in a local river. Doctors found the amoeba Naegleria fowleri in her system. Amoebic meningoencephalitis is an exceedingly rare disease -- there are only a handful of cases each year, and unlike other forms of meningitis , this infection of the brain is not contagious and cannot be passed from one person to another.
NEWS
June 30, 2011 | By Thomas H. Maugh II, Los Angeles Times/For the Booster Shots blog
The antirejection drug rapamycin, commonly used in transplants, may be able to benefit children suffering from the premature aging disease progeria, studies in cells suggest. The lab studies indicate that the drug slows aging in the cells and reverses deterioration by getting rid of toxic proteins that build up in the nucleus and damage DNA, researchers reported in the journal Science Translational Medicine. The team is now planning clinical trials in children with the disorder to test their theories.
NEWS
May 10, 2011 | By Marissa Cevallos, HealthKey / For the Booster Shots blog
Perhaps there’s more to predicting our future via the hand than we thought -- but the clues may not come from the palm, so much as the finger length. The latest in a handful of studies linking finger length to various traits concludes that people with amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease, tend to have longer ring fingers, compared with their index fingers, than do people without the disease. British researchers measured the length of the index and ring fingers of 110 people with and without ALS . Dividing the index-finger length by the ring-finger length gives a ratio that is linked to testosterone levels in the womb, which is related, unsurprisingly, to whether the hand belongs to a male.
CALIFORNIA | LOCAL
October 14, 1992 | SAM ENRIQUEZ, TIMES STAFF WRITER
After being told at the age of 13 that she had a rare liver disease and was given one month to live, Susan M. Fowler spent the next 13 years proving her doctors wrong, racing horses and motorcycles with a gusto that family and friends say belied her condition. But on Monday, the Burbank woman finally lost her battle with liver disease despite the extraordinary pig liver transplant that doctors hoped would keep her alive until a human liver donor could be found.
NEWS
December 27, 1992 | DENNIS McLELLAN, TIMES STAFF WRITER
Jill Meer doesn't avoid mirrors, but they are a constant reminder that her appearance has changed. "I gave up worrying about my looks," she says. "I had to. It was hurting too much." In addition to a puffy and "fuller" face, Meer's ring size has gone from a 7 to a 9 1/2 and her feet from 7 1/2 narrow to 9 1/2 medium. Nearly 20 years after graduating from high school, she has grown 1 1/2 inches.
NEWS
April 27, 2011 | By Marissa Cevallos, HealthKey
Rare diseases are likely to get more attention now that an international consortium of patient advocacy groups and research funders has vowed to deliver 200 new therapies by 2020 . For people with these diseases, such attention must seem long overdue. Drug companies currently don't have much incentive to develop drugs for diseases that affect fewer than 200,000 people, but almost 7,000 rare diseases exist  affecting a total of about 25 million Americans. Many are caused by mutations in a gene. The National Institutes of Health is opening a center in the fall to translate research findings in genetics to usable therapies, the Associated Press reports .   The NIH already has grant programs to spur research in rare diseases.
NEWS
February 10, 2011 | By Mary Forgione, Tribune Health
A Colorado teen with a rare neurological disease wants to do two things: Take the medical marijuana he needs to control his seizures and attend high school. Sounds simple, but, of course, it's anything but. The drama playing out between the student and the school likely has little to do with the boy's disease -- described as diaphragmatic and axial myoclonus -- and more to do with the zero-tolerance policy regarding medical marijuana. The Colorado Independent reported that the teen, whose name was not released, has been prescribed marijuana lozenges to control attacks that come on without warning.
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