Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 No, can't say I have... From: dickie_64012@... Date: Wed, 15 Apr 2009 22:37:02 +0000 Subject: [ ] New Project Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? H. _________________________________________________________________ Quick access to your favorite MSN content and Windows Live with Internet Explorer 8. http://ie8.msn.com/microsoft/internet-explorer-8/en-us/ie8.aspx?ocid=B037MSN55C0\ 701A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 I didn't. You must be special -- In , " dickie_64012 " <dickie_64012@...> wrote: > > Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? > > H. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 yes, I just got that today...... Are you going to take part? Annie 's mom http://livingwithcml.blogspot.com > > Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? > > H. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 I haven't completely decided yet. My son and I have independantly researched and all appears to be real. The website is for assistance for meds and the author mentioned has a degree in video journalism and the company listed also has credits that are verifiable. I am a member of another CML group and that is where they picked up my address and the ones that checked it out found nothing but a spanish site so they are not going to participate. With all the scams going on I am being very causious about giving out any personal information. H. > > > > Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? > > > > H. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 Hi Everyone, and I were just emailing and he suggested I share with you all what I shared with him. First of all, I can assure you I'm operating from the purest place imaginable. I don't know what sort of Spanish sites people are encountering. http://www.mycmlcircle.com/index.jsp is currently a patient assistance program site. Come mid-June or thereabouts, it will be expanded to provide various forms of patient support—both emotional and educational. I work for http://www.d2creative.com/. As the shoemaker's children, our own site is woefully out-of-date and is currently being revamped for a launch that seems to be continually delayed. By the way, we're the company that did the Team in Training video for those interested in volunteering. We also did PSAs for what was then LSA with Crawford and other celebrities whose names escape me at the moment. What we do is bring rich media (video, animation, etc) to normally static web sites. Pharma companies are very limited in the types of information they can present on their sites due to regulatory reasons. So that begs the question, how can we offer something of value to patients that can't be found elsewhere online? I contacted several CMLers a couple of months ago and had long discussions with them. As a result, I came up with the idea of having a virtual support group presented as video interviews on a variety of subjects with a cross-section of those living with CML. We're not talking about drugs but about emotional and social issues that will benefit those newly diagnosed—things like how or whether to tell your children, the value of counseling, going back to work, finding a " new normal " , etc. It used to be that when we needed to talk to patients for a project, various physicians would suggest some of their own patients. But now, with HIPAA laws, they're restricted in what they can provide. With CML, we have the additional challenge of identifying people within a very small population who are geographically spread out. And we have limited funds within which to work. So the forums become a natural place to find those who are interested in engaging with the community and helping one another out. I hope that clarifies things. Best, lvitez@... > > > > > > Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? > > > > > > H. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 I decided to participate in this video project at whatever level I end up at after working thru the questions. I have had conversations with the young lady and researched the additional information that was given to me and I believe this is a true effort to put more information for CMLers regarding our experience with CML. H. > > > > > > Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? > > > > > > H. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 Hi , It sounds like you're trying to reinvent the wheel here. There are already a number of CML support groups around the world (this being just one) who offer emotional and social support. I'm not sure what the purpose is of creating yet another one. What will your project offer that the rest of the support groups don't already? Tracey list owner > > > > > > > > Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? > > > > > > > > H. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 Hi all, Could you tell me if I'm missing something? D2 is a private company that specializes in website design, e-commerce development, application development, etc, etc. Among their clients are a large number of pharmaceutacal companies, including Novartis. 's idea of creating a virtual support group is indeed very noble. Does D2 plan on doing this free of charge or is someone going to pay for this? I belong to 9 different CML support groups. Has D2 contacted all of them or are they just offering this to the support group? Is D2 planning on speaking to all of the support groups to get a consenes of what should be included? It's the old story ... if it sounds too good to be true, it probably is. Zavie Zavie (age 70) 67 Shoreham AvenueOttawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of laurav415 Sent: April-16-09 4:42 PM Subject: [ ] Re: New Project Hi Everyone, and I were just emailing and he suggested I share with you all what I shared with him. First of all, I can assure you I'm operating from the purest place imaginable. I don't know what sort of Spanish sites people are encountering. <http://www.mycmlcircle.com/index.jsp> http://www.mycmlcircle.com/index.jsp is currently a patient assistance program site. Come mid-June or thereabouts, it will be expanded to provide various forms of patient support-both emotional and educational. I work for <http://www.d2creative.com/> http://www.d2creative.com/. As the shoemaker's children, our own site is woefully out-of-date and is currently being revamped for a launch that seems to be continually delayed. By the way, we're the company that did the Team in Training video for those interested in volunteering. We also did PSAs for what was then LSA with Crawford and other celebrities whose names escape me at the moment. What we do is bring rich media (video, animation, etc) to normally static web sites. Pharma companies are very limited in the types of information they can present on their sites due to regulatory reasons. So that begs the question, how can we offer something of value to patients that can't be found elsewhere online? I contacted several CMLers a couple of months ago and had long discussions with them. As a result, I came up with the idea of having a virtual support group presented as video interviews on a variety of subjects with a cross-section of those living with CML. We're not talking about drugs but about emotional and social issues that will benefit those newly diagnosed-things like how or whether to tell your children, the value of counseling, going back to work, finding a " new normal " , etc. It used to be that when we needed to talk to patients for a project, various physicians would suggest some of their own patients. But now, with HIPAA laws, they're restricted in what they can provide. With CML, we have the additional challenge of identifying people within a very small population who are geographically spread out. And we have limited funds within which to work. So the forums become a natural place to find those who are interested in engaging with the community and helping one another out. I hope that clarifies things. Best, <mailto:lvitez%40d2creative.com> lvitez@... > > > > > > Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? > > > > > > H. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 This program has far too many exclusions to be of much value! It appears to gather a lot of data on the patient with little return. If Novartis wants to help the people on Medicare with the " Doughnut Hole " costs, the program would have some merit. I looked into the program when it was first announced and saw it " s benefits were very limited at best. I wondered why it was offered when it benefited so few people with so little. It seems apparent the primary reason is to gather information on CML patients. M > > > > > > > > Has any one received an email regarding taking part in a new project for the Virtual CML Support Group feature for myCMLcircle.com? > > > > > > > > H. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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