Fairfax VA. 5/30/08

Lorenzo Odone lost his battle with adrenoleukodsytrophy and passed away May 30, 2008 in his sleep at home in Fairfax, VA with both his father Augusto and life long friend Omouri Hassane at his side.

Lorenzo Odone, whose story was told in the 1992 Hollywood movie "Lorenzo's Oil", starring Susan Sarandon and Nick Nolte, has died in Fairfax , VA , one day after his 30th birthday. Lorenzo was diagnosed with Adrenoleukodystrophy (ALD) in 1984, aged 6. Doctors told his parents that the neurological disease would swiftly deprive him of all his faculties and lead to his death within a maximum of two years.

Odone's parents, Augusto and Michaela, despite having no scientific background, decided to research the rare genetic disorder. Their struggle and ultimate triumph, when they found an oil that stopped the disease in its tracks and, in pre-symptomatic boys, prevented the onslaught of ALD, captivated director George Miller, who went on to make 'Happy Feet' and 'The Witches of Eastwick'. He turned the true life story into a film which won Susan Sarandon an Oscar nomination as Best Actress.

(Sarandon insisted on bringing Michaela Odone with her to the Oscar ceremonies.)

The film met with criticism from the medical community, who condemned it for setting up false hopes in families of ALD sufferers. The Odones however were amply vindicated by a study published two years ago, which showed that Lorenzo's Oil did indeed stop ALD in pre-symptomatic boys. The Odones also founded the Myelin Project, a mould-breaking medical research charity which as well as providing leadership in the search for a cure for ALD also enabled families affected by the disease to meet directly with scientists working in the field. "Scientists should never forget that their mission is to relieve human suffering rather than win the Nobel prize" said Augusto Odone when founding the project.

Watch The Myelin Projects 'Giving Back Series' video on You Tube:
http://www.youtube.com/watch?v=YfzxA2Q2gKw

or Google Video:
http://video.google.com/videoplay?docid=1582188725864761711&hl=en

In 1996, Phil Collins wrote the song "Lorenzo", based on lyrics written by Michaela.

Bedridden and unable to communicate from his seventh year, Lorenzo was kept at home by his parents. Nurses cared for him round the clock, as did his indefatigable parents. Lorenzo outlived his mother, who died of lung cancer in 2002. He is survived by his father, Augusto, his brother Francesco and sister Cristina.

Submit a message to Augusto:

http://www.myelin.org/en/testimonials/add.asp

What is Myelin?

Myelin - The white matter surrounding our nerves is made up of phospholipids- proteins of the cell membranes of Schwann cells (parasympathetic nervous system) and Oligodendrocytes (central nervous system) and forms the insulating coating around the nerves. It acts as an electrical insulator and increases the speed of impulse transmissions.

In Layman's terms: Think of the myelin sheath as the insulating cover to an electrical wire, when it is frayed or cut in places; the electrical current of the wire loses its ability to conduct itself to the intended appliance or just shorts out. The same applies to our bodies, if the nerve is not insulated, the message our brain sends to the intended appliance (muscle) loses its path along the way and we lose mobility and capability.

Demyelinating Diseases

There are two main forms of demyelinating diseases - acquired, such as Multiple Sclerosis, and hereditary, such as the many leukodystrophies.

Multiple sclerosis:
A disorder of the central nervous system of unknown cause in which the body's immune system attacks myelin in the brain and spinal cord. Whether the disease manifests in repeated episodes of inflammation or as a chronic condition, it results in multiple scars, or scleroses, on the myelin sheath, leading to impairment or loss of nerve function. There are four forms commonly recognised: Benign, Relapsing/Remitting, Primary Progressive and Secondary Progressive Multiple Sclerosis.

Leukodystrophy:
Leuko - Greek word meaning 'white. Dys - Greek word meaning 'ill'. Trophy - Greek word meaning 'growth'. So, quite literally, leukodystrophies are a group of genetic disorders characterised by the imperfect development or maintenance of myelin (white matter). Currently, all Leukodystrophies are incurable and dramatically affect the lifespan of one affected.

About The British Trust for The Myelin Project

The Myelin Project is an international non-profit charity, which funds research to find treatments/cures for demyelinating diseases. We rely solely on donations and fund raising, which mainly comes from families and friends who have a loved one affected by a demyelinating disorder. These include Multiple Sclerosis (MS) and Leukodystrophies.

These conditions are aggressive, terminal and devastating, which at present there is no known cure/treatment. There are 36 known Leukodystrophies; these mainly affect children and some adults. The earlier the child develops a Leukodystrophy, the more aggressive the onset of deterioration and death.

My son Luke, who is 7yrs old, was diagnosed just before his 3rd birthday, he was a very active, intelligent and lively boy, but within 9 months he deteriorated and is now trapped in a body that no longer works, he can not sit, talk, walk, run, move, eat or drink, yet his intelligence remains intact along with his very good sense of humour and his very easy smile. I am using my son as an example so you can get a picture of how cruel these disorders are. Luke is living on borrowed time, as death usually occurs 2-3 years after onset of symptoms.

Adults, who have an adult form of Leukodystrophy or Multiple Sclerosis, are having to contend with the same battle. Multiple Sclerosis is the most common of the demyelinating diseases and affects adults of all ages; the deterioration is equally as bad as Leukodystrophies. Multiple Sclerosis is a very complex disorder. There are many thousands of children across the globe that are all fighting the same devastating battle against Leukodystrophy, along with Hundreds of thousands of adults battling Multiple Sclerosis (MS).

The Myelin Project was founded by Augusto and Michaela Odone in 1989. In 1984 they learned their son Lorenzo had inherited a rare condition Adrenoleukodystrophy (ALD). In a short period of time Lorenzo could not walk, talk or move, doctors predicted an early death. Refusing to accept their son's prognosis, Augusto and Michaela set about trying to find a therapy to halt the progression of the condition. Their determination has saved Lorenzo's life, as well as many boys across the world. Lorenzo's Oil is both the name of the medicine and the title of the film starring Nick Nolte and Susan Sarandon (Block Buster 1992). Their next step was finding a way to repair the damage to the myelin sheath, which caused the deterioration/symptoms in Lorenzo.

This is when The Myelin Project was founded in America, to raise funds for The Myelin Project, with branches in the UK (British Trust), Italy, Spain, Germany, Canada and United Emirates. Behind The Myelin Project is a unique, dedicated team of world leading researchers, laypeople and families who are affected by one disease or another. Research findings are shared from lab to lab across the globe. We all have the same focus and drive to finding treatments/therapy's for Multiple Sclerosis (MS) and Leukodystrophies.

Our researchers all collaborate with each other avoiding unnecessary duplications, to achieve our goal of repairing damaged myelin. There are over 57 demyelinating diseases, which include 36 known leukodystrophies and other conditions such as Multiple Sclerosis. Any breakthrough with repairing the myelin will potentially be a treatment for demyelinating diseases.

Augusto Odone has now retired as president, to devote more time to his beloved son Lorenzo, who will be 30 this year. Augusto has appointed Dr Margaret Weis as our new president; Augusto will continue to support The myelin Project for many years to come. All money raised goes directly to where it's needed, Research. We are the only charity world wide who has funded/conducted the first human clinical trial for Multiple Sclerosis (MS). At present we are again funding/supporting a second human clinical trial for Metachromatic Leukodystrophy (MLD). We have world leading authorities on board and the best researchers carrying out these trials. No other charity is helping to fund this huge medical breakthrough; this is what sets us apart from other charities/organisations. The Myelin project so far has financed 42 experiments for a total in excess of $5 million (US).

Every penny raised is dedicated to research; The British Trust office is run from the Manager/Secretary's home, this is to keep administration costs down. Those who help run The British Trust, Manager/Trustees are all affected by one disease or another, and so have the understanding and compassion that is needed in these delicate situations of newly diagnosed, deterioration or death of a loved one. The British Trust office is further unique in that we are open 24 hours a day, 7 days a week and 365 days a year. We provide information/advice on Lorenzo's Oil and the latest research, helping families to fund raise, even a shoulder to cry on, we help when and where we can. It's about the people and for the people.

The British Trust for The Myelin Project does not receive any funds/grants/money from the government, lottery or any other source. The government does not contribute any money for research into untreatable Leukodystrophies such as MLD; it seems as if we are on our own!

But we are not, we are all in this together and there is only you and us who can make a difference. We have come this far and by working together; we will go on to find more treatments and cures.

For further information please do not hesitate to contact our office.