Good Morning America will be reporting on the GDNF clinical
trialparticipants who are being denied further treatments --  next
Tuesday morning Dec, 28th, sometime between 7 and 9 AM.
Linda

On Tue, 21 Dec 2004 11:06:32 EST Dolores Buente <[log in to unmask]>
writes:
> Here is the copy of the letter I'd referred to earlier.
>
> Dee
>
>
>
> Dear Friends,
>
> During this busy holiday season - I'd like to ask you to do
> something that
> will take approximately 30 minutes of your time and could make a
> huge
> difference.  I would like to send Amgen a BIG HOLIDAY GREETING CARD
> from all of us for a
> grand total of 300 letters!        (I have included addresses at the
> bottom
> of this message.)
>
> The purpose of these letters would be to:
> 1. wish them a happy holiday season (I'm serious), because we really
> need
> their help.
> 2. ask them to provide compassionate use of GDNF to each of the 34
> research
> participants who were enrolled in their clinical trial.
>
> If we could get them to jump this hurdle, then perhaps we can work
> on asking
> them to continue GDNF research in the new year and expand the
> program to help
> everyone with PD.
>
> If you and 2 people you know could sit down for just 30 minutes and
> write a
> brief note, it could make a tremendous difference.  Once you write
> this note,
> you have two options:
>
> OPTION #1:
> Send out 2 copies to:
> 1) Kevin Sharer, the CEO
> 2) Roger Perlmutter, the Exec VP of Research and Development
> (addresses below)
>
> OPTION #2:
> Send a copy to every member of the Board of Directors at Amgen
> (names and
> addresses below - this will entail sending 23 copies of your
> letter.)  Although
> this second choice may seem daunting, it will REALLY HELP to
> directly inform
> Amgen governance that we are still interested in GDNF and that we
> haven't given
> up.
>
> This is going to be all about VOLUME so please don't assume that
> your
> neighbor will do this, so you don't have to.  The only way for this
> initiative to be
> effective is for you to act immediately. I am setting the deadline
> for
> Christmas Eve.  Think what an impact it could have if each member of
> the Board of
> Directors received 300 letters on this single topic in just 2
> weeks!!!!  Even if
> you have already written to them, please join us again to add to the
> volume of
> letters!!!!
>
> The addresses are below.  Whichever option you choose, we are deeply
> grateful
> for your help.
>
> PLEASE SEND ME AN EMAIL AT [log in to unmask] AND LET ME KNOW
> HOW MANY
> LETTERS YOU SENT OUT AND TO WHOM!  I WILL ANNOUNCE THE FULL COUNT ON
> CHRISTMAS
> EVE!
>
> Below are a few (unsolicited, forgive me) suggestions as to how to
> frame the
> letter:
>
> 1. Please be direct and to the point by emphasizing and continuously
> using
> the term "compassionate use" throughout your letter.
>
> 2. Please refrain from angry or confrontational language (I
> especially need
> to work on this); although we are all very emotional about this
> topic, I
> believe it would be more effective in the long run if we DON'T put
> them on the
> defensive.
>
> 3. Give direct instructions as to what CAN be done (i.e. GDNF could
> be
> provided on a compassionate basis if Amgen chooses to do so).
>
> 4. Include reference to the website: http://www.gdnf4parkinsons.org/
> just in
> case they haven’t heard about what has happened.
>
> 5. [If you are one of the research participants]: Include details
> about how
> life without GDNF is much more difficult compared to life with GDNF.
>
> Thank you so much everybody and have a wonderful holiday season!
> And remember
> …”Never underestimate the power of a small group of people to
> change the
> world; indeed it is the only thing that ever has….” (Margaret
> Mead).
>
> Happy Holidays!
> Kristen
>
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