Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Hi Ralph......Hey, publicity isn't my thing. Besides, it sounds very self-serving to promote one's own web site. Now, if someone else wants to write "Today" or "Dateline" and mention the JDMS Diary, that would be different ;-) However, we did have a nice front-page article in our local paper in 11/99, complete with photos. Someone send the paper's health reporter an anonymous tip about . Ralph But Ralph, you're so good at it !!!! You know what happens when you become good at something... You get to do it ! What a wonderful thing to happen to you and your family. I think the newspaper is a good way to get the public more aware of this disease. Did anything happen after the news article....like doctors calling or writing you wanting to know more? Hope you have a great day. Vicki-PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 > But Ralph, you're so good at it !!!! You know what happens when you > become good at something... You get to do it ! What a wonderful thing > to happen to you and your family. I think the newspaper is a good way > to get the public more aware of this disease. Did anything happen > after the news article....like doctors calling or writing you wanting > to know more? Actually, the silence after the article was deafening. Of course, we heard about if from all our local family and friends and such that didn't really know what was going on with , but nothing from doctors or other JDMS families. I guess the reach wasn't far enough. I get a LOT more feedback about the web site - say, 10-15 new email contacts a week, even a rare note from a doctor. Ralph ========================================================== Ralph Becker http://www.ralphb.net/ Will Juggle for Food. RKBA! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Ralph... Did the doctor who wrote you about 's Diary learn anything from it? Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 > Ralph... Did the doctor who wrote you about 's Diary learn > anything from it? They don't learn anything medically, but they seem to appreciate seeing a patient's perspective and that of their family. I liken it to how doctors react to Jim's book - most have no idea what day-to-day life is like with Myositis. I see our doctors in Boston using it as a learning tool. They look at their records and observations, and compare them to what appears in the Diary. It helps them interact with other patients and their families, I imagine. I have heard that pediatric medical centers all over the world are systematically sending new JDMS families to the Diary. I have also been told that is an " international celebrity " in pediatric rheumatology circles. Ralph ========================================================== Ralph Becker http://www.ralphb.net/ Will Juggle for Food. RKBA! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 Well Ralph...at least they're learning something from it and that's very important. Well, time to go do some more on my barn....Have a great day. Vicki Quote Link to comment Share on other sites More sharing options...
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