So what's the point of this trip? Well the email I wrote to the Hospital Physicists' Association said "...to increase collaboration between UK and US research groups and look at organising an international conference" and that's true. Having pondered this for a few months I've worked out two other motivating drives.
One is, the one in a million chance, that I've thought of a treatment for PLE.
After Philadelphia I'm traveling to the Burnham Institute in San Diego. They have been awarded a large grant to study PLE and I've been in touch with them since my son was diagnosed three years ago. I'm giving a presentation discussing the links between a couple of scientific papers I've read. One (wildly optimistic) reading suggests a simple well known compound as a therapy for PLE. So one reason to go is that the Burnham Insitute may be the"Research Casino" that will take my bet on this being something that might treat my son.
Another motivation is that the trip is a pilgrimage to give thanks for the work that has so far kept my son healthy.
I'm finding that, as the journey becomes more real, connections become more visible. I have a university friend in America who also has a son with a heart condition and lots of contacts in US research groups. I could have got in touch at any time but we spoke on the phone last night for the first time in 15 years!
One week tomorrow!
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