Hi, Jonsi -
Each meeting is different. Sometimes we have a structured agenda, like when we did the live blood analysis.
Usually, the meetings are somewhat structured in that I will bring new information to the group about research, treatments, products, media releases, etc.
For example, we've had a zapper demonstrated, an Eyeclops that projects onto a TV screen (and were able to see microscopic fibers), an ozone machine. We've had a few people who distribute products that we know are helpful to our condition discuss their products.
We have even had interested doctors attend.
The unstructured part of the meetings is really about sharing and support.
We have been meeting about a year and a half now. The attendance is irregular for a variety of reasons, including distances that people have to travel, being too sick to attend, some have moved out of state, transportation issues, etc.
But, unfortunately, there are always new people.
I don't know why the number of registered affected families (on MRF and OSU websites) hasn't exploded. Within our small geographical area, we have new people popping up on a regular basis.
I really wish people would register, regardless of how they feel about those organizations. We have to make it know, somehow, just how many of us there are.
Thanks for asking, Jonsi. If anything new emerges from one of these meetings, I will pass it on.
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