Here is information on the Deferno Trust--mentioned in this article.
Declan Walsh spoke passionately before the Elan board last week, asking for help for his wife Natalie, who needs full time nursing care and is now a paraplegic and can no longer speak, due to her PML.
The Deferno Trust exists to provide support, to gather and share information on the Tysabri related PML illness. The Deferno Trust aims to connect PML sufferers, their families and friends and everyone that has been touched by Tysabri related PML. We will gather and provide facts and information for Multiple Sclerosis sufferers and their families so they are fully informed about Tysabri related PML.
Our mission is to gather data consistently on MS patients that have contracted PML through use of the drug Tysabri (natalizumab) and ensure MS sufferers are aware of the growing number of PML patient cases worldwide.
The Deferno Trust was established by Declan R Walsh in 2010. Declan’s wife Dr Natalie Murphy was diagnosed with Tysabri related PML in December 2009. It is Natalie’s wish, as a Pharmacologist, to ensure the evidence of this disease is made known to all current and potential users of the Tysabri drug.
To support the Deferno Trust there are a number of things we invite you to do-
Post a message on our message board
Blog about your experience or that of loved one
Make a donation which will assist in the care of Natalie and assist in planned research
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS