Monday, November 24, 2008

iplex update

Dear friends,
Wanted to provide all concerned, a brief update on our current status with Iplex. Insmed has been in contact with, and assured the group leaders of Team IPLEX, that they have begun the process of clearing regulatory hurdles both in the USA and other countries. Insmed has also assured us that the production demands of those currently expressing an interest in Iplex are no barrier at all. While we are all anxious and ready to proceed at once with Iplex, alas, the wheels of the machine must turn and all regulatory obilgations must be met in order for Insmed to legally provide the drug to PALS. This process should be relatively quick, (all things considered).

I regret that there is little more to report at this time. There is little that we, Team Iplex, could, and probably should, do at this time to encourage the momentum of this process. Our continued efforts as a group have acheived what no one thought possible. Any further collective efforts, such as writing/calling, etc, may only serve to distract from Insmeds mandatory compliance with regulatory processes. We (Team IPLEX) have been assured that the second that the regulatory process is in place, it will be updated on Insmed's Corporate Webpages. We have been also assured that we would be notified/get a call outlining the details. However, I would still encourage everyone concerned, to check Insmeds web site on a regular basis.
I just can't tell youi how much it has meant to me and my family, to have been on this journey with all that have helped to make this possible.

To think that a small group of patients and caregivers fighting with all of our might, with a never say die attitude - could make such an incredible difference and have influence on multi-billion dollar companies is pretty incredible, at least that's the way I feel.

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