[quote user="Chris Stiehl"]
The problem is, by the time the patients or parents get calmed down enough to learn about the studies, it's too late. How can we get them to volunteer quickly without adding to the stress of the diagnosis?
I've had Type 1 for 50+ years. Yes, I think we should have a beer sometime!
Offering help to a desperate person should attract plenty of attention, so my guess is the breakdown (or lack) of communication. No one knows what Type 1 is. That's apparent from the silly things people say about the disease. I don't blame them. I don't know a darn thing about Duchenne muscular dystrophy (as a poor example).
Advertisement to people who are not sick is difficult, because it's hard to get them to pay attention. There is a lack of concern. There are other problems to worry about. I think the key is to get endos and hospitals the information, and have a network of established data (a website for example) where information can be kept current and studies can be updated AND AVAILABLE to folks who are admitted to the hospital.
this is probably a good "six sigma" type project for detailed analysis.
congrats on the hard work and dedication of surviving the dark ages. I travel for work, & live in Jersey. If you let me know your city I'll look you up!