Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 I meant CT (Cranial Tech) packets, not " CR " . oops! And I forgot to say the nurse w/ BCBS of MN emailed me back to confirm that everyone I faxed down there GOT my fax and she will make sure they get on the ball giving me a response.... she said she is " not good at waiting " so I am grateful for her eagerness to assist me w/ this possible national campaign! By the way, as group members, I am curious as to how you yourself have or ARE making a difference in the plagio/tort awareness? I'd love to hear members stories to help inspire me to keep going on behalf of my son Jaden and all babies w/ this diagnosis. Thanks! ~Amy, mommy to Jaden 6 mo's MN, plagio/mild tort, started CranioCap > 4/23/04 SEEING SOME GOOD ROUNDING OUT NOW! --- In Plagiocephaly , " Amy in MN " <skisum88@h...> wrote: > Just wondering if anyone was gonna post that link for everyone to > urge Oprah to raise awareness about plagio/tort? I actually went > ahead and emailed her Jaden's story, since I've been on my little > soapbox/bandwagon lately. AND I also sent Jaden's story down to > Risk Mngmt/Patient Relations at the main clinic in Duluth because > they oversee the whole clinic system where Jaden's pede is at. So > now both sites have his story, and I am hoping they will respond. I > will keep bugging them every week till they do. I called the clinic > where his pede is at today, they are agreeing to accept the CR > packets once I get the shipment. YEY:) > > ~Amy, mommy to Jaden 6 mo's MN, plagio/mild tort, started CranioCap > 4/23/04 SEEING SOME GOOD ROUNDING OUT NOW! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Hi, I don't mean to rain on your parade, but this has all been done before, I think this is like the 4th or 5th time members of this group have emailed her and other. Please don't be disappointed if nothing comes of it. Keep us posted. --- In Plagiocephaly , " Amy in MN " <skisum88@h...> wrote: > Just wondering if anyone was gonna post that link for everyone to > urge Oprah to raise awareness about plagio/tort? I actually went > ahead and emailed her Jaden's story, since I've been on my little > soapbox/bandwagon lately. AND I also sent Jaden's story down to > Risk Mngmt/Patient Relations at the main clinic in Duluth because > they oversee the whole clinic system where Jaden's pede is at. So > now both sites have his story, and I am hoping they will respond. I > will keep bugging them every week till they do. I called the clinic > where his pede is at today, they are agreeing to accept the CR > packets once I get the shipment. YEY:) > > ~Amy, mommy to Jaden 6 mo's MN, plagio/mild tort, started CranioCap > 4/23/04 SEEING SOME GOOD ROUNDING OUT NOW! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Hello Amy It is great what you are doing, and I keep my fingers crossed that you will be heard. Have you tried emailing the Sally show? I believe she deals more with health issues than Oprah. I know she has done shows on dwarfism / giant ??? Sorry I'm not sure how these conditions are called and on when a child ages 10x as fast. She might be more willing to do this. Sandy Willow's Mom Torticollis resolved Cranio Germany Grad 04 > > Just wondering if anyone was gonna post that link for everyone to > > urge Oprah to raise awareness about plagio/tort? I actually went > > ahead and emailed her Jaden's story, since I've been on my little > > soapbox/bandwagon lately. AND I also sent Jaden's story down to > > Risk Mngmt/Patient Relations at the main clinic in Duluth because > > they oversee the whole clinic system where Jaden's pede is at. So > > now both sites have his story, and I am hoping they will respond. > I > > will keep bugging them every week till they do. I called the > clinic > > where his pede is at today, they are agreeing to accept the CR > > packets once I get the shipment. YEY:) > > > > ~Amy, mommy to Jaden 6 mo's MN, plagio/mild tort, started > CranioCap > > 4/23/04 SEEING SOME GOOD ROUNDING OUT NOW! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Hi Amy, I did email oprah a few months ago but did it again just to try it... I have little hope with it though. I've emailed a zillion people and nothing comes of it. But, with the help CT I should be able to help a few people locally. However, I would imagine we'll need more info from CT cuz we don't get enough... I have emailed all the t.v stations, newspapers all over MN and WI as well as many evening news 60/60,etc, and Montel . 'sigh' but never heard anything. Hopefully someone will come through for us! Kim > > > Just wondering if anyone was gonna post that link for everyone > to > > > urge Oprah to raise awareness about plagio/tort? I actually > went > > > ahead and emailed her Jaden's story, since I've been on my > little > > > soapbox/bandwagon lately. AND I also sent Jaden's story down to > > > Risk Mngmt/Patient Relations at the main clinic in Duluth > because > > > they oversee the whole clinic system where Jaden's pede is at. > So > > > now both sites have his story, and I am hoping they will > respond. > > I > > > will keep bugging them every week till they do. I called the > > clinic > > > where his pede is at today, they are agreeing to accept the CR > > > packets once I get the shipment. YEY:) > > > > > > ~Amy, mommy to Jaden 6 mo's MN, plagio/mild tort, started > > CranioCap > > > 4/23/04 SEEING SOME GOOD ROUNDING OUT NOW! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Amy, I do wish you luck, but please don't get your hopes up. This mass Oprah email has been done so many times since I've been part of this group and nobody ever heard anything back. I did alot last year as far as emailing/writing different people and had the most luck with the media. You are going to have a much tougher time with the healthcare and insurance industries. I didn't get anywhere with either until I got the media involved into making phone calls for me (after a Boston news channel called BCBS for us we found out w/in 24 hrs they'd be paying for Hannah's previously denied helmet, no appeal necessary!). As far as other things I've done, I work per diem at a residential home for teenage mothers and have done plagio classes periodically for the last year or so. These are (mostly) first time moms, and many are pregnant and/or don't know much about babies, so the education is really invaluable. They are downright rude and disrespectful to some of the speakers we have, but they always seem to really enjoy the plagio class! They always get a kick out of the headsicles and the class ultimately always ends up in some argument of one girl accusing another of not giving her baby enough tummy time, lol, but at least they're aware now! We also have a " no bottle propping " policy instituted! , mom to Hannah, DOCband #3 3/30 Cape Cod, Ma > > > > > Just wondering if anyone was gonna post that link for everyone > to > > > urge Oprah to raise awareness about plagio/tort? I actually > went > > > ahead and emailed her Jaden's story, since I've been on my > little > > > soapbox/bandwagon lately. AND I also sent Jaden's story down to > > > Risk Mngmt/Patient Relations at the main clinic in Duluth > because > > > they oversee the whole clinic system where Jaden's pede is at. > So > > > now both sites have his story, and I am hoping they will > respond. > > I > > > will keep bugging them every week till they do. I called the > > clinic > > > where his pede is at today, they are agreeing to accept the CR > > > packets once I get the shipment. YEY:) > > > > > > ~Amy, mommy to Jaden 6 mo's MN, plagio/mild tort, started > > CranioCap > > > 4/23/04 SEEING SOME GOOD ROUNDING OUT NOW! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 Hi Jill, I have been with this group for over 2 years now. In that time, many people (including me) have tried to contact Oprah about this. We even selected a day to bombard her with the topic. Nothing. Like you, we all thought (and still do) that this would be a great topic for her show. Just because it didn't work then, doesn't mean it won't work now, so it is worth a try. Just please, don't get your hopes up. (sorry) , mom to Makenna. LLUMC helmet grad '03 > > Someone had mentioned about trying to get some media attention to > plagio, and also they mentioned maybe Oprah! Well, I just sent her a > topic idea for an upcoming show....guess what the topic > is....PLAGIOCEPHALY....not that she will use it...but maybe. I also > sent her the link to the petition, so maybe we can get Oprah to sign > it too! LOL I also gave her the link to my site and referred her to > check out the links I provided for more information, and of course > this group is listed. Who knows...maybe she will post, HAHA. > Anyhow, I do think that more people need to be aware of plagio, and > maybe that will save a lot of children from having to go through the > bands and other therapy. It's worth a shot, right? Just wanted to > let you all know, and if I get anything back I will be sure to tell > you all! Thanks again for all of your support! I love this group! > Everyone is so wonderful and helpful. I am on here all day long, > checking every 5 minutes for new posts...lol My chat doesn't seem to > work though..it just freezes up on me. So I guess I will chat in > here, lol! Thanks again! > > Jill > Hannah (3 1/2 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 Hi Jill, Not to burst your bubble or anything but Oprah has been contacted many, many times by plagio parents. Nothing has ever come of it. > > Someone had mentioned about trying to get some media attention to > plagio, and also they mentioned maybe Oprah! Well, I just sent her a > topic idea for an upcoming show....guess what the topic > is....PLAGIOCEPHALY....not that she will use it...but maybe. I also > sent her the link to the petition, so maybe we can get Oprah to sign > it too! LOL I also gave her the link to my site and referred her to > check out the links I provided for more information, and of course > this group is listed. Who knows...maybe she will post, HAHA. > Anyhow, I do think that more people need to be aware of plagio, and > maybe that will save a lot of children from having to go through the > bands and other therapy. It's worth a shot, right? Just wanted to > let you all know, and if I get anything back I will be sure to tell > you all! Thanks again for all of your support! I love this group! > Everyone is so wonderful and helpful. I am on here all day long, > checking every 5 minutes for new posts...lol My chat doesn't seem to > work though..it just freezes up on me. So I guess I will chat in > here, lol! Thanks again! > > Jill > Hannah (3 1/2 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 > > > > Someone had mentioned about trying to get some media attention to > > plagio, and also they mentioned maybe Oprah! Well, I just sent her > a > > topic idea for an upcoming show....guess what the topic > > is....PLAGIOCEPHALY....not that she will use it...but maybe. I > also > > sent her the link to the petition, so maybe we can get Oprah to > sign > > it too! LOL I also gave her the link to my site and referred her > to > > check out the links I provided for more information, and of course > > this group is listed. Who knows...maybe she will post, HAHA. > > Anyhow, I do think that more people need to be aware of plagio, and > > maybe that will save a lot of children from having to go through > the > > bands and other therapy. It's worth a shot, right? Just wanted to > > let you all know, and if I get anything back I will be sure to tell > > you all! Thanks again for all of your support! I love this > group! > > Everyone is so wonderful and helpful. I am on here all day long, > > checking every 5 minutes for new posts...lol My chat doesn't seem > to > > work though..it just freezes up on me. So I guess I will chat in > > here, lol! Thanks again! > > > > Jill > > Hannah (3 1/2 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 Hi Jill Gosh, I would love nothing more than to see these big folks really put their money to work for something important, but I just don't see it happening. I don't want to be rude or so, but please don't hold your breath. Sandy WIllow's Mom Tort resolved Cranio Germany Grad http://www.geocities.com/samipa74/Willow_Lanette.html > > Someone had mentioned about trying to get some media attention to > plagio, and also they mentioned maybe Oprah! Well, I just sent her a > topic idea for an upcoming show....guess what the topic > is....PLAGIOCEPHALY....not that she will use it...but maybe. I also > sent her the link to the petition, so maybe we can get Oprah to sign > it too! LOL I also gave her the link to my site and referred her to > check out the links I provided for more information, and of course > this group is listed. Who knows...maybe she will post, HAHA. > Anyhow, I do think that more people need to be aware of plagio, and > maybe that will save a lot of children from having to go through the > bands and other therapy. It's worth a shot, right? Just wanted to > let you all know, and if I get anything back I will be sure to tell > you all! Thanks again for all of your support! I love this group! > Everyone is so wonderful and helpful. I am on here all day long, > checking every 5 minutes for new posts...lol My chat doesn't seem to > work though..it just freezes up on me. So I guess I will chat in > here, lol! Thanks again! > > Jill > Hannah (3 1/2 months) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.