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DRUG TRIAL IN THE
USA FOR JUVENILE BATTEN DISEASE
You may have seen on the BDSRA’s website that Dr. Pearce and the
group at the Batten Center, Directed by Jon Mink, at the University
of Rochester Medical Center are preparing for a human trial of the
drug, Mycophenolate Mofetil (CellCept) to determine if it has any
affect on the progression of the disease. This is based on
information that CellCept does have a positive effect on some
aspects of disease progression in mice. There are still many
questions to answer about exactly what happens in these treated
mice, but the big question will be whether CellCept can do the same
thing in children? The BDSRA want to raise $500,000 through their
"Make the Juvenile Trial Happen” campaign to find out (see
their update in The Illuminator available to download on
their website at: www.bdsra.org).
We are in active
contact with Dr Jon Mink and Lance Johnston, Executive Director at
the BDSRA to explore options for UK children/young adults’
participation in this trial at tackling Batten’s from the immune
angle. For the initial phase only US patients are being accepted. We
will keep members informed of any developments that occur.
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