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PARKINSN  December 2006, Week 4

PARKINSN December 2006, Week 4

Subject:

Important to organize

From:

rayilynlee <[log in to unmask]>

Reply-To:

Parkinson's Information Exchange Network <[log in to unmask]>

Date:

Sat, 23 Dec 2006 09:11:07 -0700

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (198 lines)

Organize, organize, organize
 To contact us:
[log in to unmask]
 December 21, 2006

The Pro-Cures movement is comprised of hundreds of organizations
representing millions of patients and their families.  That is both its
strength and its weakness.

During the HR810 debate, Senator Tom Harkin (D-IA) presented for the record
letters from nearly 600 medical associations and societies, disease
foundations and patient advocacy groups in support of expanding embryonic
stem cell research.

Sam Brownback, the primary spokesperson for the opposition, offered none.
That is not to say that Brownback had no public support.  He had quite a
lot, but nothing from a bona fide medical, disease or patient organization.

The most notable difference in the support of the two sides is their reach,
their ability to mobilize their grassroots - people like you and me.

On the Pro-Cures roster we find nearly 600 organizations.  And it is to our
detriment that they are, for the most part, disconnected from a unified
base.  They're not organized into a national grassroots network.  They don't
share their databases, which in most cases are held tightly for fear that
donors might be "stolen" by their brethren, all competing for contributions.
There is no national Pro-Cures symbol, nor an umbrella organization under
which all can identify.  There is little cross-border assistance for state
issues.

This renders the grassroots Pro-Cures movement disjointed, fragmented and
largely unable to speak with a unified voice.

This is not to say that the grassroots has been totally ineffective.  To the
contrary, it is indeed gaining traction everywhere.  But it is to say that
it lacks the cohesiveness and unity which could change it into perhaps the
most powerful political force in the nation.

The anti-cures groups have had 33 years in which they figured this out and
they've organized accordingly.  They are a maze of numerous connected
organizations and many are household names:  Focus on the Family, National
Right to Life and the Christian Coalition, to name but a few.  Then add to
the mix the Catholic Conference and the Baptist Convention.  They have
learned to collaborate and cooperate in their mutual causes, which affords
them power.  Real power.  The kind of power that makes some politicians live
in constant fear, knowing they're a force to be reckoned with.

On a mere moment's notice the anti-cures groups can deliver a wave of faxes,
a mountain of letters and a flood of emails.  Their leaders can walk
unannounced into almost any legislative office and be seen.  They easily and
readily get audience with legislative aides and legislators.

It's not that all legislators agree with them.  Most don't.  But the
anti-cures groups command respect, if for nothing other than their sheer
power; power that comes with the magnitude of numbers that can be mobilized
by their well oiled machine.

They didn't accomplish this overnight.  It took many years of struggle,
trial and error, learning, and the willingness to put aside egos to perfect
the formula.  But remember, spawned from scores of pro-life organizations,
they've had 33 years to get it right.  That's a monumental head start.

The Pro-Cures movement does have a great advantage, though.  We don't have
to wait 33 years to perfect a new model.  We need not reinvent the wheel.
We can duplicate their model so long as we can agree to collaborate and
cooperate, to unify and share our resources.

The numbers are clearly on our side.  There are about 100 million American
patients who stand to benefit from embryonic stem cell research.
Realistically, some are children.  They can't vote or become too politically
active.  Some are part of the religious right and wouldn't join us in any
event.  Some are too ill to become involved.  And some are simply apathetic,
content to believe they can't make a difference.  But even if we were to
assume that those exceptions represent a whopping 70% of our potential
universe, that still leaves a potentially unified 30 million activists.

Let me repeat that:  30 million potentially unified activists.  That's 24.7%
of the total votes cast in the 2004 presidential election.  How's that for a
political force?  And guess what?  If you're reading this, there's a high
probability you're one of us.

Fortunately, we don't have to start from ground zero.  An infrastructure is
already in place.  The Stem Cell Action Network (SCAN) was founded in 2003
by Idelle Datlof, who today serves as its Executive Director.  SCAN was
formed as the grassroots complement to the many Pro-Cures organizations.

For instance.

¨ SCAN sponsored the first ever U.S. Stem Cell conference at the University
of California - Berkeley in 2004.

¨ SCAN was acknowledged by Congresswoman Diana DeGette as among the first
organizations to endorse HR810, the Stem Cell Research Enhancement Act.

¨ SCAN endorsed the Missouri Coalition for Lifesaving Cures and their
campaign for Missouri Amendment 2.

¨ SCAN endorsed Floridians for Stem Cell Research and Cures and their
campaign for the Florida Cures Initiative.

¨ SCAN endorsed Californians for Cures, backing Proposition 71.

¨ SCAN endorsed the Kansas Coalition for Lifesaving Cures in their efforts
to preserve embryonic stem cell research there.

¨ SCAN is listed among the Harvard Stem Cell Institute's recommended Public
Education and Advocacy links.

¨ SCAN is listed among the recommended Public Education and Advocacy links
of the Center for Regenerative Medicine at Massachusetts General Hospital.

¨ SCAN is listed among the recommended links of the University of
Wisconsin's
Waisman Center.

¨ SCAN is listed among the recommended links of Stem Cell Research News.

¨ SCAN is listed among the recommended links of Stem Cell Research
Foundation.

¨ SCAN was the first to post Portraits of Hope - a place where patients
could tell their stories, "putting a face" on the need to pursue the
research.  This served as a model for numerous other organizations.

I could go on and on, but suffice it to say that coast to coast you'll find
SCAN's thumbprints everywhere.  Thus, SCAN is uniquely positioned as the
group to carry the flag, the symbol of unity of the grassroots of the
Pro-Cures movement.

Let's also be clear as to what SCAN is not.  It is not the advocacy
representative of any singular disease group.  It is not about representing
the interests of Parkinson's patients over diabetics.  Nor is it meant to
supplant any other organization or usurp their activities.

To the contrary, SCAN is the hub that unites these groups, that unifies
their collective voices and serves to address the stem cell side of their
respective communities.

For individuals:
The process to join SCAN is simple and painless.  Just sign up at the web
site.  Click here to go to the registration page.  There is no fixed cost to
join.  Give what you can, what you feel you can afford, what you think is
fair.  If you can't afford anything, that's okay too.  You will note that
the registration page is completely separate from the donation page.  This
is by design.  Neither is a prerequisite of the other.

As a member, you'll receive SCAN's e-mail newsletter, StemFacts.  It will
provide you with stem cell news, updates on the Pro-Cures movement and
information about how the grassroots - people like you - are making a
difference across the country.

Membership also comes with a little responsibility.  When pending stem cell
policy or legislation is on the line, SCAN will notify you and ask that you
send an email, fax or letter.  SCAN will provide you with all the details
about the issue, suggestions of what to write, and instructions on how to
get your communiqué properly delivered (email address, fax number, street
address).  Your participation in these efforts will shape the future of stem
cell research - and you never have to leave home to accomplish this.

Finally, SCAN requests that you help swell the ranks.  Try to recruit at
least two others to join with you.

For organizations:
Again, the process is simple and painless.  There are only two requirements.
First, agree to use your data base list cooperatively to further the stem
cell research cause.  SCAN will forward a request that you, in turn, forward
to those on your list.  Same issues; same email, fax or letter.  In short,
the request flows from SCAN and through you.  All you have to do is commit
to being a conduit.

Second, identify your organization as a member of SCAN with a banner on your
web site, which SCAN will provide.  The banner will provide a link to the
SCAN web site.

Once again, there is no set fee for membership.  All are welcome regardless
of financial condition.  If your organization can contribute, great.  If
not, that's okay too.

Now think of the potential power:  On a moment's notice, millions of
communications from like-minded Pro-Cures advocates - a bloc representing
25% of the voting public.

Unification of the Pro-Cures grassroots begins with you.  It begins today.

Sign up as a member of the Stem Cell Action Network.  Just click here.

Do it now.

- Jeff Eisen

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December 2004, Week 5
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December 2003, Week 5
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December 2002, Week 5
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December 2000, Week 5
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December 2000, Week 1
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December 1999, Week 5
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February 1996, Week 1
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December 1995, Week 5
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