Tuesday, November 11, 2008




Dear Friends, Attached is an official letter co-signed by Genentech, Tercica, Ipsen(who now own Tercica) and Insmed regarding their agreement to provide IPLEX to the ALS community world-wide . Several thoughts I wish to share:>>
1. The agreement appears to have been developed in direct responseto our planned Demonstration at the Capitol Building in Washington, DC onTuesday, November 11, 2008.>>
2. The agreement appears to resolve the primary reason for Insmed’sprior refusal and inability to provide IPLEX to those with ALS—acourt-agreed settlement that previously prohibited Insmed from so proceedingand an accompanying royalty requirement that further tied the corporatehands of Insmed.>>
3. The agreement is still subject to Insmed’s ability andwillingness to promptly follow through on this new relief and on thecompliance of all of the signing parties to truly provide the “development …analysis and …satisfaction of regulatory requirements” referred to inparagraph three of the accompanying letter.>> My statements above are not intended to minimize, in any way, theapparent success of our planned demonstration to have “started the ballrolling.” Now we must continue the pressure, in the form of ourDemonstration on Tuesday, November 11 at the Capitol Building in Washington,DC, to absolutely assure that Insmed and the other signing parties followthrough with greatest speed and unswerving action to fulfill every intentionspecified in the letter.>> I urge you to carefully and thoughtfully review this message and itsattachment, and if you are in agreement, then do two things:>>
1. Those who are able, join us in Washington, DC this Tuesday to“keep the ball rolling.”>>
2. Everyone who agrees with the statements herein should pass onthis message to all ALS families, caregivers, patients, and others committedto the well-being of persons with ALS to help continue our efforts to fullyimplement what we have started to accomplish.>>
“While it might be a little overzealous to claim total victory just yet, Itruly believe that total victory will be attained when IPLEX is:>> a) in the hands of every ALS family that requests it;>>
b) at a cost that is sustainable by those families;>>
c) IPLEX is showing the efficacy that we believe it will show throughappropriate dosage and under safely administered conditions.>>
Until all three of the conditions above are attained, I feel a moreappropriate statement should be "We Are Winning" While There May Be still besome bumps in the road ahead, I truly feel that by getting the principlestogether to commit to a resolution in writing, we are at least over themajor stuff. Therefore it is felt very necessary to continue to apply thevery much needed pressure that is very much needed to complete our mission.Keep the letters, photos, videos, emails campaign going to the media and toGenentech, Insmed & Tercica. Get your story and contact information to allthree companies. Join us in Washington as it is as critical as ever ...maybe even more so. Let's keep up our multilevel business approach - whichnow needs to include a financial plan. We have to keep up the fight untilthe drug is in the hands of all PALS worldwide that believe in thepossibilities of Iplex. Team Iplex is still in motion with lots more to do.>> To think that a small group of patients and caregivers fighting with allof our might - could make such an incredible difference and have influenceon multi-billion dollar companies is pretty incredible.> PLEASE help/support us..

No comments: