I am 'reporting' in from Washington DC. We had PALS and loved ones come in from Washington State, California, Michigan, Florida, Virginia, North Carolina, New Jersey, Wisconsin and may other states. It was great to meet everyone. We had a very good gathering, which in part was a celebration of the release of Iplex for ALS patients from the patent settlement agreement. There were 2 film makers present and some media - including the Washington Post.
Insmed tells us they are in the process of trying to get Iplex to us (regulatory, etc). As part of the process - Insmed is compiling data from the Italian Iplex patients - so this should be very informative.
Team Iplex is not resting until we are able to get Iplex into the hands of all ALS patients that would like to try it and this includes trying to make it affordable and financially feasible for all. It is a lofty goal -- but as you all know -- we are a very determined group!
We feel our small but mighty group has sent a message that ALS patients will not go silently into the night... that we do indeed have a voice.
We pray that Iplex will help ALS patients. We will keep you informed as we progress.