About Us

About The British Trust for The Myelin Project

The Myelin Project is an international non-profit charity, which funds research to find treatments/therapy’s/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.

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 and is categorised into four types (as follows): Benign – Approx 10% of all MS sufferers. Characterised by one or two attacks after which the condition stabilises for a long period of time, generally in excess of 10 years. Relapsing-Remitting – Approx 40% of all MS sufferers. People often make a full recovery after a relapse or attack. Further relapse occur after which increasing disability remains. Relapses vary in severity and duration, existing symptoms may worsen and new ones may appear. Secondary Progressive – Approx 40% of all MS sufferers. It is estimated that half of the people with relapsing-remitting disease eventually stop entering the remission phrases and their condition deteriorates continuously. Primary Progressive – Approx 10% of all MS sufferers. There are no recognisable relapses or remissions, but people show progressive disability whereby symptoms persist following their first attack.

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 had 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 Sharandon (Block Buster 1992). Their next step was finding a way to repair the damaged 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.

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). We have again funded/supported a second human clinical trial for Metachromatic Leukodystrophy (MLD) in 2006. We have world leading authorities on board and the best researchers carrying out these trials. 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.

COMING TOGETHER IS A BEGINNING

KEEPING TOGETHER IS PROGRESS

WORKING TOGETHER IS SUCCESS

To see our Mission Statement click here