Dear Don and others in this discussion group.

It's not good when organizations that we all need -- like PDF and NPF --
cannot unite to advance our cause.

But there's a larger problem that faces us all.  We don't have the
resources we need to address the crying need for support and for
research to find cures.   Parkinson's isn't a cause that our nation is
very interested in doing anything about. So PDF and NPF find themselves
in competition for the limited funding that is out there.

Indeed, with so many of our nation's finite resources going toward
miilitary purposes, we can hardly expect there to be adequate funding of
the research we need to cure Parkinson's in a timely way.

I don't mean to bring up an irrelevant topic in this group, but it seems
to me that there is an important connection between our nation's
military priorities and its neglect of conditions like Parkinson's.

As you may know, the Bush administtration is not only spending hundreds
of billions of taxpayers' dollars to build more lethal weapons systems,
but is also literally buying political and military support for the war
against Iraq throughout the world.  The biggest aid deal is being
offered to Turkey.   The offer on the table has been 15 billion in
aid--$5 billion in grants and $10 billion in guaranteed loans--in
exchange for Turkey's agreement to host US ground troops for an invasion
of northern Iraq.

Let;s consider just the 5 billion dollars in grants that have been
offered to Turkey (little of which is likely to trickle down to actually
help the Turkish people).  That is enough money to fund 500 well-endowed
biomedical research projects (at $10 million per study) to find cures
for diseases like Parkinson's, juvenile diabetes, Alzheimer's, spinal
cord injury, MS, ALS and related conditions that affflict so many
millions of people worldwide, young and old.   Our dedication to
eradicating disease would help to transform the way that people in other
parts of the world view our nation.

Let's suppose that we were to take just 10 percent of the $5 bilion
being offered to Turkey -- 500 million dollars -- and devote that to
finding a cure for PD.  There is every reason to believe that this
research effort would find a cure within a very few years.

Is it being selfish to prioritize curing diseases over preparations for
war such as buying Turkey's support?  I don't think so.    Our support
of promising biomedical research is motivated not only by our desire to
relieve the suffering and save the lives of ourselves and our loved
ones, but also to help millions of people with conditions like
Parkinsons whom we do not personally know .  We don't want them to have
to go though the difficulties that we have experienced -- as persons
with PD or as famliies and friends of someone with this condition.

We know that cures can be found.  In the domain of stem cell research
alone, it has already been estabglished that embryonic stem cells can
generate dopamine-producing cells in rats that reverse Parkinson's
symptoms.  This research path, together with other research
explorations, would have an excellent chance of coming up with a cure
for Parkinson's very soon, if the research were adequately funded.  The
500 millions dollar figure cited above would be more than ample.  In a
few years,  the one million or so  Americans with PD could be greatly
helped or cured.

Ironically, it is quite possible that a war against Iraq will fan the
flames of anti-Americanism worldwide, thereby making us more, not less,
vulnerable to terrorism in the future. And it's widely agreed that North
Korea, for example, poses a much greater danger to world peace than does
Iraq.   The only antidote is to work with other nations to build an
international framework of law to resolve human conflicts in a
non-violent manner.

It is true that the potential war against Iraq is partly about securing
oil supplies in the region.  And indeed, if "all goes well" with the war
(which may still result in the maiming and death of tens of thousands of
Iraqis, many of them children), we may save, let's say, a quarter of a
dollar on each gallon of gas.  If you have Parkinson's, or know someone
who does, please ask yourself if the tradeoff is worth it.

How can we get the word out about the crying need for medical research
to address curable diseases?  One of our problems is that the war
advocates are more visible than we are. And they've wrapped themselves
in Old Glory,   In this atmosphere, the day-to-day suffering from
illnesses may be all but invisible, except to those like ourselves who
are directly affected.

We can change that.  Let's work with both PDF and NPF, and alongside
people like Michael J. Fox and Christopher Reeve to put a human face on
the need for research.   There are also other effective biomedical
research advocacy groups out there, including the two that I work with:
http://www.stemcellaction.org and http://www.sabr.us.    It strikes me
that this is a good way to help our nation live up to its highest values
of  respect for life and the alleviation of unnecessary suffering.

More specifically, if you haven't already done so, please consider
sending in a "portrait of hope" to be posted on the web by the people at
 http://www.stemcellaction.org
Each portrait honors someone with a condition like PD.  In this way we
hope to put a human face on the need for stem cell research.

Best wishes to all,

Raymond Barglow

> I am new to this situation, what are the issues between the PDF and
> NPF? Is this a power dispute about who gets to award the research
> grants?
>
> And while we are talking about this, why does Michael J. Fox see the
> need for his own separate charity?  Is it affiliated with PDF or NPF?
>
> Also, are there other PD charities/groups out there as well?
>
> Thanks,
>
> Don, diagnosed 6 weeks ago.
>
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