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 > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn