my name is Ellen Cameron and I'm a
research volunteer for Parkinson's UK
and I guess the first thing to say is
that as a person with Parkinson's it's
really encouraging to know we've got
people like Roger on our team to know we
go people start doing this kind of work
behind us and I'm looking for the the
cure is massively encouraging and a real
source of hope for a zone so thank you
very much in thinking about what what is
different tough for a person with
Parkinson's thinking about the kind of
stuff we've seen I think the the basic
difference between a person with
Parkinson's and I guess the family as
well feel the same way it's the the
urgency that when you've got a an
incurable progressive disease then time
becomes rather important and you become
quite anxious to see things moving along
so it's if we look at way another
Parkinson's research advocate so I put
that recently this quote she came up and
this was Benjamin Sisneros view he's a
Canadian advocate it's very active it's
just the pace at which science is
developing is slower than the pace at
which my neurons are dying I think that
emphasizes the hurry that we're all in
and we'd really like to see this this
process become a bit faster so I think
if you look at that again if you sit in
the in clinic and look for a disease
modifying technique then it's true the
the pace of science is quite slow but if
you look behind that and measure the
progress of the science the publications
it's going very fast and it's rising
exponentially it's getting faster as
more and more work being done but for
some reason it's not getting through to
the clinic and Rogers give us a view of
a lot of the things are happening so
despite this this kind of thing which i
think is is true I'm quite hopeful that
we've I see some to break through and
I'd like to share with you just a few of
the reasons that fruit from my personal
point of view I I'm
so the first thing is I think we've seen
a massive explosion recently in our
understanding of genetics and we we
understand what that means for
Parkinson's and as Becky and Roger
described that leads us to sometimes in
clinical trials and targeting them the
people for whom a particular therapy
will make a difference so Parkinson's is
very complex because they can
universities it and convincing of that
and complex problems need a lot of data
unfortunately in the last few years our
ability to build fast computers and
understand the software to analyze data
has come a long way as we hear about big
data big data rewards big scale and we
were seeing the big cohorts and sets
that partisans UK has developed through
the monument funded in Oxford and
through trying Parkinson's we're seeing
those clash with other data to to look
for new learning that otherwise it's
just an opaque turns and we're seeing
more and more developments and the Fox
foundation doing similar things and
collaborations between companies and
collaborations between charities to just
really like the big data have its day
and finally the last point I want to
make is that patient with researcher
activists and advocates are increasingly
becoming important I guess I would say
that but I think the whole has been
people who've been able to argue and
comment and research from a person with
Parkinson's point of view but often they
tend to be neurologists who were
unfortunate enough to develop the
condition but in the Internet age with
Facebook and Twitter and YouTube around
we hear lots of bad things about them
but the these platforms are doing some
very good things because they're
allowing across the world patient
advocates to to see each other to form a
community to form a powerful and
effective community and it's possible
for mere mortals to learn a bit about
the research and come to the point where
you can be relevant in conferences that
we're seeing increasingly people with
Parkinson's appearing in the debates in
in conferences and I think that I can
only be a good thing to help scientists
understand what's really important to us
so before I finish it's important I
think for people with Parkinson's people
affected by parties is to be able to be
part of the conversation time to take
part in research and there are a lot of
activity a lot of options are available
to us so if you're interested in helping
helping us with that and learning more
about research and learning
opportunities to take part and help
drive your data your genomic data into
the the sort of the pool and help us
find the solution quickly and the URLs
up there to go to the partners website
put research on the end it'll take you
to something our website which will show
you lots of things you can do in just
two in closing I say if any of you are
over 60 and not yet diagnosed with
Parkinson's predict PD is a trial that's
looking for thousands of people are
getting to put in lots of data to
understand what's possible if you want
to sign up for that if you know it's
already signed up for it former 16 don't
have Parkinson's that's the opportunity
for you
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