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Thank you Perry for your testimony and for representinig all of our hopes
and dreams for a cure so well.  Dr. Young asked the best person possible
to speak on behalf of the Parkinson's community. It was regetable that
your testimony was at the same time as many of our Hill visits were
scheduled, but you know you were in our thoughts even if we couldn't be
there physically.
Thanks also for all your efforts over these last nine years.
Linda Herman
On Fri, 2 Apr 2004 06:17:35 -0500 Perry Cohen <[log in to unmask]> writes:
> I attended my 9th consecutive annual PD policy forum this week (In
> 2001
> PAN did not hold a forum but over 2 dozen people came anyhow, so Sid
> Levin organized housing and logistics and I orgnized a program,
> including talks by all Federal PD Programs and a visit to NIH labs).
> For me these are wonderful occassions to meet with old friends and
> new
> ones, to learn about the latest science, as well as to meet your
> represenatives (if you have them) in Congress. This year was no
> exception.  Discussions were lively and newcomers as well as
> old-timers
> came away satisfied and exhausted.
>
> Noteable among the events were:
> 1. The increasing emphasis on new Therapeutics development and
> clinical
> trials, which have been the emphasis of my work with PDF for the
> past 3+
> years
> 2.  Strong interest demonstrated by the new Director of NINDS who
> spent
> the entire day Sunday in the audience to learn with the rest of us.
> 3. Since I do not have voting representatives in Congress to visit
> Tuesday, I was particularly pleased to be invited by Dr. Anne Young,
> Chair of Neurology at Mass. General Hospital and President of the
> 34,000
> member Society for Neuroscience to testify before the Labor-HHS Sub
> committee of the House Appropriations Committee.
>
> Perry
>
>
>
>
http://appropriations.house.gov/index.cfm?FuseAction=PressReleases.Detail
&PressRelease_id=361&Month=3&Year=2004
>
> My prepared testimony read as follows
> DR COHEN:  Thank you, Dr. Young.  Mr. Chairman, I am Perry Cohen and
> I
> have been asked by the Society for Neuroscience to speak to you
> today
> about Parkinson's disease.  I was diagnosed with Parkinson's disease
> in
> 1996 and have been fighting the disease as an advocate and a patient
> ever since. Today over 200 of my colleagues from all over the
> country,
> are on the hill to talk to our representatives about how the Federal
> government can help us rid ourselves of this unwelcomed companion
> who
> intrudes into our lives every hour of every day and as time goes on
> is
> increasingly intrusive, stealing more and more of our energy, our
> psyche, and our ability to function normally. For each one of us
> there
> are thousands of others, many disabled, who cannot be here. Time is
> not
> neutral for someone with a degenerative disease.  A sustained effort
> is
> needed, and the NIH is integral to the success of that effort.
>
> However, I am not here to advocate for PD research; I am here to
> urge
> the Congress to follow through on what it started.  The doubling of
> the
> research budget of NIH has now begun to produce many new insights
> into
> the fundamental processes of PD and many other conditions, and we
> are
> poised for dramatic improvements in treatment if only we apply this
> knowledge.  Now is not the time to let up on the gas pedal when we
> are
> so close to results.
>
> After 8 years with continual deterioration of my PD I tell people I
> can
> see the dark at the end of the tunnel. To me that means long term
> custodial care, where I become a burden on my family and the
> community.
> I am on the leading edge of the 'baby boom.'  As a nation we face an
> enormous burden from these long term care costs if we do not soon
> solve
> some debilitating diseases that increase with age, like PD.
>
> I can also see the light in the tunnel, thanks to Scientists like
> Dr.
> Young and colleagues who depend on funds from the NIH to conduct the
> basic research on the fundamental cellular processes and
> identification
> of promising targets for new therapies. We have not yet fully
> realized
> the benefits of the build up of our scientific enterprise. NIH is
> orienting its research activity rightly toward clinical applications
> of
> science and working with the FDA, private foundations and industry
> to
> create new drugs or devices to help patients.    Thus, your
> investment
> in NIH not only holds promise for me and my cohort to avoid being a
> drain on the economy, but it also helps provide for the future of
> our
> country in a global economy as the basis of a vibrant biotech
> industry.
> Thank you .
>
>
>
>
>
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