GDNF letter writing campaign

[Dolores Buente <Annieann12345@xxxxxxx>]

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 kristensuthers@xxxxxxxxx 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 havenât 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
ââNever underestimate the power of a small group of people to change the 
world; indeed it is the only thing that ever hasâ.â (Margaret Mead).
 
Happy Holidays!
Kristen

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