One Family's Grief Gives Another Life Aug 8, 2008
Nine-year-old Evan Cousineau was being treated for adrenoleukodystrophy, a rare genetic disease. Both families, the Cousineaus and the Lawsons, had set up camp at the nearby Ronald McDonald House. (ABC News)
World's First Transplant Of Both Arms Aug 5, 2008
27, 2007) Continuing with more than a decade of research, doctors at the University of Minnesota have discovered a treatment to help patients with advanced cases of adrenoleukodystrophy (ALD), a rare disorder. (Dec. (Science Daily)
Stem Cells Stop Mouse Shivers Cold, Could Thwart Rare, Neurological Disorders Jun 6, 2008
The scientists report today in the journal that the finding could bring them closer to finding a treatment for incurable neurological conditions, such as Pelizaeus-Merzbacher's disease and adrenoleukodystrophy, the mysterious, debilitating disorder portrayed in the ... the subject of Lorenzo's Oil, surpassed all expectations living, with adrenoleukodystrophy until a week ago, when he died at age 30. (Scientific American)
Stem cells 'halt nerve disease' Jun 5, 2008
One of the most well-known of these affected Lorenzo Odone, who died last week after decades battling adrenoleukodystrophy. Surviving minority. (BBC News -- Health)
Stem Cells Improve Fatal Neurological Condition Jun 5, 2008
Just last week, Lorenzo Odone, whose battle with one such disease, adrenoleukodystrophy, was featured in the film Lorenzo's Oil, passed away. Currently there is no treatment for any of these conditions. (Science Daily)
* Lorenzos Oil child gave hope to thousands Jun 4, 2008
Lorenzos parents, untrained in medicine, undertook their own research to produce a therapy for their sons genetic disease, adrenoleukodystrophy (ALD) ... Adrenoleukodystrophy (ALD) is one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, a membrane that surrounds nerve cells in the brain. (Taipei Times, Taiwan -- World)
* World News Quick Take Jun 3, 2008
Odone was found at age six to have adrenoleukodystrophy, or ALD. His doctors told his parents the disease X caused by a genetic mutation that causes the neurological system to break down X would lead to death in two years. UNITED STATES Marine dies over US$8. (Taipei Times, Taiwan -- World)
Lorenzo's Oil boy is dead at 30 Jun 1, 2008
Lorenzo had Adrenoleukodystrophy (ALD), a genetic disease that progressively destroys the brains of young boys. The disease leads to the build up of dangerous fatty acids - long-chain fatty acids - in the blood, and within a year children are paralysed, blind, and unable to speak. (BBC News -- Americas)
'Lorenzo's Oil' Inspiration Dies at 30 Jun 1, 2008
Odone was found at age 6 to have adrenoleukodystrophy, or ALD. His doctors told his parents the disease caused by a genetic mutation that causes the neurological system to break down would lead to death in two years. The disease leads to the accumulation of substances called very long chain fatty acids in cells, which damages the material that coats nerve fibers in the brain. (Fox News)
Lorenzo Odone dies May 31, 2008
Lorenzo Odone's battle with the rare adrenoleukodystrophy, or ALD, a genetic disease, died one day after his 30th birthday - 20 years longer than doctors expected him to live. He died of pneumonia after getting food stuck in his lungs. (Melbourne Herald Sun)
'I trusted this woman to save my son's life, and she did' Nov 20, 2007
I trusted this woman to save my son's life, and she did' - The Boston Globe. Local Search Site Search. (Boston Globe)
U of M performs first systemic therapy for fatal childhood disease Nov 3, 2007
The program leads the nation in the use of umbilical cord blood in the treatment of adults and children and in the development of innovative treatments of various rare genetic diseases such as adrenoleukodystrophy (ALD) and Fanconi anemia. The transplant was done as part of a clinical trial funded by donations made to the University of Minnesota EB Fund and Childrens Cancer Research Fund in Minneapolis. (EurekAlert!)
Gene therapy sees early success for neurodegenerative disease Oct 31, 2007
The results raise hopes for a treatment for adrenoleukodystrophy (ALD), and, the researchers add, mark the first successful use of an attenuated HIV virus to carry a therapeutic gene into a patients cells. HIV is a promising vector for transferring corrective genes into a host it can penetrate directly into cell nuclei, making it a theoretically efficient way to introduce new genetic material. (Nature News Service)
Therapy for 'Lorenzo's oil' boys Oct 30, 2007
Treatment for adrenoleukodystrophy has mainly involved bone marrow transplant, but this can be problematic due to lack of donors and rejection by the body ... Adrenoleukodystrophy (ALD) is a rare inherited disorder that leads to progressive brain damage, failure of the adrenal gland and eventually death. (BBC News -- Health)
Harvard rallies to help family Oct 25, 2007
Her beautiful, happy, carefree 5-year-old was diagnosed with Adrenoleukodystrophy, or ALD, a neurological disorder that attacks nerve cells in the brain. It affects the patient's vision, coordination, and hearing, and often causes dementia and seizures. (Boston Globe)
Doctor Accused of Killing Patient to Harvest Organs Aug 1, 2007
Navarro, who weighed about 80 pounds, was born with a neurological disorder known as adrenoleukodystrophy. He also had and seizures. (Fox News)
Transplant surgeon in California accused of administering drugs to hasten death Jul 31, 2007
"The central issue of this case is the mistreatment of a developmentally disabled, dependent adult in an attempt to hasten the person's death for organ transplantation,'' Chief Deputy District Attorney Stephen Brown said in an interview. The coroner's office this year determined that Navarro died of natural causes. Last month, his mother, Rosa, filed a wrongful-death and medical malpractice lawsuit against Roozrokh and others, claiming her son was removed from life support without her permission... (The Star Online, Malaysia)
Tips for battling your insurance company Jul 22, 2007
Robinson's 7-year-old son, Bailey, suffered from adrenoleukodystrophy, a rare genetic disorder affecting the brain, portrayed in the movie "Lorenzo's Oil.". The Robinsons say their insurance company refused to pay for $200,000 worth of medical bills. (CNN -- Health)
* A need for more transparency at nonprofits Jul 16, 2007
The money collected following the peach farmer story, or that raised following an earlier report about the Chang brothers, who suffered from adrenoleukodystrophy, highlighted our society's capacity for compassion. Yet the controversy that ensued exposed a serious problem with the supervision of donations, which risks causing the public to lose faith in charitable drives and nonprofit organizations. (Taipei Times, Taiwan -- World)
Rare, genetic disease claims life of 9-year-old Tucson boy Apr 25, 2007
The disease is Adrenoleukodystrophy, or ADL. It has claimed the life of a 9-year-old Tucson boy who was healthy and happy just a few months ago ... She said she found out last year that her brother had a rare genetic disease known as Adrenoleukodystrophy, or ADL.. (FOX 11, AZ)
Hope for Asher / Campaign launched to find cure for rare, hereditary disorder Mar 9, 2007
Two-year-old Asher Bloxom was diagnosed with adrenoleukodystrophy at 3 months old ... It's called adrenoleukodystrophy ... The fundraising goal is a 500,000 endowment, and the income will go to researching adrenoleukodystrophy, a rare metabolic disorder. (Missoulian, MT)
Calif transplant doctor scrutinized in preparation of organ donor Mar 1, 2007
Navarro was born with adrenoleukodystrophy, a neurological disorder, according to his mother. He lived in a home for mentally and physically challenged adults in the year prior to his death. (North County Times)
U of MN doctors uncover treatment for advanced ALD patients Feb 21, 2007
Continuing with more than a decade of research, doctors at the University of Minnesota have discovered a treatment to help patients with advanced cases of adrenoleukodystrophy (ALD), a rare disorder affecting the nerves. The results are published in the late February issue of Bone Marrow Transplantation. (EurekAlert!)
Association of Public Health Laboratories Applauds Introduction of Newborn Screening Saves Lives Act Feb 16, 2007
"It is especially significant that the new bill directs the Secretary of Health and Human Services to develop a national contingency plan for newborn screening so we can build upon the experiences learned after Hurricane Katrina and that it continues to provide critical monies for assuring the quality of all newborn screening laboratory testing." The funding provided in the bill for the Centers for Disease Control and Prevention (CDC) will enable CDC to utilize state-of-the-art science to... (PR Newswire)
Another chance for Lorenzo's oil Feb 6, 2007
He knows that right up to the day Moser died at age 82, the scientist was passionate about fighting Lorenzo's disease, known as adrenoleukodystrophy or ALD.. Moser cared so much, in fact, that even as his strength slipped away after surgery for cancer and painful blood clots, and as doctors debated whether to amputate his legs, he and his lab team kept working on a long-sought screening test that could soon eliminate much of the suffering caused by ALD the suffering that Moser's character in the... (The Standard-Times, MA)
Hugo Moser, 82; neurologist's portrayal in 'Lorenzo's Oil' belied his real character Jan 26, 2007
By Thomas H. Maugh II, Times Staff Writer January 26, 2007 Dr. Hugo Moser, the prominent neurologist who was vilified in the movie "Lorenzo's Oil" but who was known as a compassionate and energetic researcher by the parents of hundreds of children with the rare neurological disease known as adrenoleukodystrophy, died Saturday at Johns Hopkins Hospital in Baltimore after a long battle with pancreatic cancer ... Moser identified the biochemical abnormalities underlying a family of 15 closely... (Los Angeles Times)
News in brief Jan 24, 2007
A researcher into childhood mental retardation, he advocated testing all newborns for a condition known as adrenoleukodystrophy, or ALD. In Lorenzo's Oil, actors Susan Sarandon and Nick Nolte portrayed the relentless efforts of Augusto and Michaela Odone to find treatments for their son, Lorenzo. Mr Odone, 74, credited Dr Moser with being more receptive than most physicians. (Guardian Unlimited -- World)
Hopkins doctor studied rare disorder ALD Jan 23, 2007
The Swiss-born Dr. Moser, portrayed in the movie by actor Peter Ustinov, spent his life researching the scientific basis of childhood mental retardation and advocated testing all newborns for the condition known as adrenoleukodystrophy, or ALD.. He was director of the Neurogenetics Research Center at the Kennedy Krieger Institute, a professor of neurology and pediatrics at the School of Medicine, and was conducting research into ALD treatments for children and adults. (SunSpot.net)
Nowhere to Run Sep 24, 2006
He wasn't supposed to get adrenoleukodystrophy, or ALD, a rare genetic disorder that victimizes 1 in 100,000 people and was introduced to the public by the 1992 movie, "Lorenzo's Oil.". Pat, now 22, was an honor student and three-sport athlete at South Medford High who earned a soccer scholarship to St. Mary's College, an NCAA Division I program in Moraga, Calif. (Mail Tribune, OR)
Rage has long history on sporting stage Jul 16, 2006
Alomar later donated $252,000 toward research for the disease Adrenoleukodystrophy in honor of Hirschbeck's late son. Jump to page: 1. (Sun-Sentinel.com)
Becks Moved By Sick Brothers' Plight May 26, 2006
The boys all suffer from adrenoleukodystrophy, or ALD, a genetic condition, which affects mostly boys and attacks the brain and nervous system. The illness means they may gradually lose their sight and hearing and become paralysed. (Sky News)
Brain illness nightmare for boys May 25, 2006
Callum, Connor and Jack Smith from Leicester have all been diagnosed with Adrenoleukodystrophy (ALD), which affects eyesight and motor skills. ALD mostly affects boys and most sufferers die before becoming adults, Dr Jayaprakash Gosalakkal said. (BBC News -- Health)
Three brothers are diagnosed with rare brain disease May 25, 2006
The parents of six-year-old Callum Smith were told their son was suffering from the incurable disorder Adrenoleukodystrophy (ALD) a month ago. Now Scott and Nicola Smith have learned that Connor, eight, and five-year-old Jack also have the disease. (Telegraph.co.uk)
Hope for three brothers with deadly brain disease May 24, 2006
A month ago, Scott and Nicola Smith found out that their middle son, Callum, who is six, had the genetic condition known as Adrenoleukodystrophy, or ALD. The illness, which featured in the film Lorenzo's Oil, attacks the brain and central nervous system and results in the loss of sight and the ability to walk or talk. Most people who have ALD die before they reach adulthood. (Guardian Unlimited -- UK)
Anguish of mother who passed fatal brain disease to three sons May 24, 2006
Mrs Smith, from Leicester, was only recently told by doctors that she carried a recessive gene for the disease, known as adrenoleukodystrophy (ALD). The disease, which featured in the film Lorenzo s Oil, with Nick Nolte and Susan Sarandon, affects only boys and is found in its most aggressive form in children aged between 6 and 10. (Times Online)
'Smart' genetic therapy helps the body to heal itself May 8, 2006
Dr. Pujol and her team are trying to develop new therapies for X-linked adrenoleukodystrophy (X-ALD). This disease involves a single gene on the X chromosome (the ALD gene) and is the most common inherited single-gene disease involving damage to the myelin sheath, which insulates nerve cells in the brain. (EurekAlert!)
Adrenal Insufficiency May 2, 2006
Most other cases result from infection (with tuberculosis, cytomegalovirus, the HIV virus, fungi, and other infectious agents), or as a complication of various metabolic and genetic disorders such as adrenal hyperplasia and adrenoleukodystrophy, or as a sequelae to certain metastatic cancers. Also, in some bleeding disorders, such as antiphospholipid syndrome or in trauma, adrenal insufficiency may result from thrombosis or hemorrhage. (Suite101.com)
Homemade walking aid tackles MS May 1, 2006
They are hoping it will help people with MS, cerebral palsy, those recovering from strokes and adrenoleukodystrophy, a condition similar to MS.. "My wife's walking range was down to about 50 or 60 metres," explained Mr Armitage. (BBC News -- Technology)
