The Deferno Trust

The Deferno Trust was set up in January 2011 to assist in the fight against Tysabri related Progressive multifocal leukoencephalopathy (PML).

Tysabri is a Multiple Sclerosis drug and PML is a rare disorder that damages the material that covers and protects nerves in the white matter of the brain, for which there is not cure. PML, in this case, is caused when Tysabri interacts with the JC Virus, a dormant virus that a majority of the world’s population carry. Tysabri related PML is extremely rare. As of July 2011, there are only 149 cases worldwide, of which 29 people have died.

Currently, Natalie Murphy, age 42 from Sligo remains the only confirmed case in Ireland/UK.

The Deferno Trust has two main aims – to assist with the provision of long term care for Natalie Murphy and to continue as the only independent worldwide patient advocacy and family support group for those people affected by Tysabri related PML.