Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 They removed that statement on our Great Strides brochure. Lynette Mom to Traci 7w/cf and 11w/ocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 They removed that statement on our Great Strides brochure. Lynette Mom to Traci 7w/cf and 11w/ocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 I first want to say that this week has been very enlightening for me. Where I work (in a college environment) I passed out over 60 ribbons, and I have only done it to friends and professors that helped me raise money in Great Strides walks in the past and I have had a tremendous response. I only gave 2 ribbons to students that work for me and they have sent at least 10 students to me with information that they have siblings/cousins/or some form a relative that has CF. We are tabling in the student center tomorrow and they are helping me. I think that this is great. I have had one complaint for the information letter that I have been passing out with my pins. I didn't put what I call " the death factor " in my information. I feel with being 3 years old, I don't want to dwell on that. Am I being stupid? That was what I was called, well not in that word, really naive and denying the truth was the way she put it to me. In my information I state website addresses where they can go and find that information out for them selves. I noticed the CFF wants us to put that in also. Isn't this playing the " pity me " card? Please don't flame, I know that this can be a sticky subject for some. Sorry for this being real long Thanks and everyone have a great rest of the week. Traci mom of 3 and only 1 w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Way to go, Traci! We all thank you for your work! I don't put the fatality stuff in my info, either. Sometimes in a personal letter I mention that my child has to battle the odds to live even a third as long as other children born the same year in the U.S. But for general info to the public, I do not play that pity card either. It is much more important to me that is accepted and his disease understood than it is for me to alienate him by talking about his life span. You're right. Very touchy subject. Do what you're comfortable with, but I certainly would prefer that strangers get to meet us as interesting diverse people, not fatally ill. You are not being stupid. You are being a good Mom. -Lenora >I first want to say that this week has been very enlightening for >me. Where I work (in a college environment) I passed out over 60 >ribbons, and I have only done it to friends and professors that >helped me raise money in Great Strides walks in the past and I have >had a tremendous response. I only gave 2 ribbons to students that >work for me and they have sent at least 10 students to me with >information that they have siblings/cousins/or some form a relative >that has CF. We are tabling in the student center tomorrow and they >are helping me. I think that this is great. > >I have had one complaint for the information letter that I have been >passing out with my pins. I didn't put what I call " the death >factor " in my information. I feel with being 3 years old, >I don't want to dwell on that. Am I being stupid? That was what I >was called, well not in that word, really naive and denying the >truth was the way she put it to me. In my information I state >website addresses where they can go and find that information out >for them selves. I noticed the CFF wants us to put that in also. >Isn't this playing the " pity me " card? Please don't flame, I know >that this can be a sticky subject for some. > >Sorry for this being real long > >Thanks and everyone have a great rest of the week. > >Traci mom of 3 and only 1 w/cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Way to go, Traci! We all thank you for your work! I don't put the fatality stuff in my info, either. Sometimes in a personal letter I mention that my child has to battle the odds to live even a third as long as other children born the same year in the U.S. But for general info to the public, I do not play that pity card either. It is much more important to me that is accepted and his disease understood than it is for me to alienate him by talking about his life span. You're right. Very touchy subject. Do what you're comfortable with, but I certainly would prefer that strangers get to meet us as interesting diverse people, not fatally ill. You are not being stupid. You are being a good Mom. -Lenora >I first want to say that this week has been very enlightening for >me. Where I work (in a college environment) I passed out over 60 >ribbons, and I have only done it to friends and professors that >helped me raise money in Great Strides walks in the past and I have >had a tremendous response. I only gave 2 ribbons to students that >work for me and they have sent at least 10 students to me with >information that they have siblings/cousins/or some form a relative >that has CF. We are tabling in the student center tomorrow and they >are helping me. I think that this is great. > >I have had one complaint for the information letter that I have been >passing out with my pins. I didn't put what I call " the death >factor " in my information. I feel with being 3 years old, >I don't want to dwell on that. Am I being stupid? That was what I >was called, well not in that word, really naive and denying the >truth was the way she put it to me. In my information I state >website addresses where they can go and find that information out >for them selves. I noticed the CFF wants us to put that in also. >Isn't this playing the " pity me " card? Please don't flame, I know >that this can be a sticky subject for some. > >Sorry for this being real long > >Thanks and everyone have a great rest of the week. > >Traci mom of 3 and only 1 w/cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2002 Report Share Posted October 16, 2002 Way to go, Traci! We all thank you for your work! I don't put the fatality stuff in my info, either. Sometimes in a personal letter I mention that my child has to battle the odds to live even a third as long as other children born the same year in the U.S. But for general info to the public, I do not play that pity card either. It is much more important to me that is accepted and his disease understood than it is for me to alienate him by talking about his life span. You're right. Very touchy subject. Do what you're comfortable with, but I certainly would prefer that strangers get to meet us as interesting diverse people, not fatally ill. You are not being stupid. You are being a good Mom. -Lenora >I first want to say that this week has been very enlightening for >me. Where I work (in a college environment) I passed out over 60 >ribbons, and I have only done it to friends and professors that >helped me raise money in Great Strides walks in the past and I have >had a tremendous response. I only gave 2 ribbons to students that >work for me and they have sent at least 10 students to me with >information that they have siblings/cousins/or some form a relative >that has CF. We are tabling in the student center tomorrow and they >are helping me. I think that this is great. > >I have had one complaint for the information letter that I have been >passing out with my pins. I didn't put what I call " the death >factor " in my information. I feel with being 3 years old, >I don't want to dwell on that. Am I being stupid? That was what I >was called, well not in that word, really naive and denying the >truth was the way she put it to me. In my information I state >website addresses where they can go and find that information out >for them selves. I noticed the CFF wants us to put that in also. >Isn't this playing the " pity me " card? Please don't flame, I know >that this can be a sticky subject for some. > >Sorry for this being real long > >Thanks and everyone have a great rest of the week. > >Traci mom of 3 and only 1 w/cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 Our brouchure used to say that CF was the number one genetic killer of children and young adults. It now says CF is a genetic disease affecting 30,000 children and adults. Lynette Mom to Traci 7w/cf and 11w/ocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 Our brouchure used to say that CF was the number one genetic killer of children and young adults. It now says CF is a genetic disease affecting 30,000 children and adults. Lynette Mom to Traci 7w/cf and 11w/ocf Quote Link to comment Share on other sites More sharing options...
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