Hi all, Just wanted you to know that Barb is checking on this for us. Somehow Laura learned that we were concerned about he e-mail and e-mailed me privately explaining everything. Now, how does she know we are concerned? Is she reading our post? Evidently she is. She says she got our names from the forums. Are they making money on this? Here is what she wrote me: Hi Jeanie, I wrote you yesterday and have heard that some people were concerned about whether this is legitimate. I can assure you I’m operating from the purest place imaginable. In fact, I’ve personally gone to great lengths to make this project happen. _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. At the same time _http://www.cmlalliance.com/index.jsp_ (http://www.cmlalliance.com/index.jsp) will be expanded to focus more on the educational side of things. 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 As the shoemaker’s children, our own site is woefully out-of-date and is currently being revamped for a launch that seems to be continually delayed.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 Cindy Crawford and other celebrities whose names escape me at the moment. What we do is bring rich media (video, animation, etc) to normally dry and mundane web sites. Pharma companies are very limited in the types of information they can present on their sites due to regulatory reasons. They would love to provide an open forum for patients but there are so many restrictions on what can be said on their sites that they can’t have patients having uncontrolled discussions about meds, side effects, etc., on their sites. 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 with a cross-section of those living with CML, presented as video interviews on a variety of subjects. 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 very 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, Laura Laura Vitez Creative Director D2 Creative 28 World’s Fair Drive Somerset, NJ 08873 P: 732.507.7333 [email protected]_ (mailto:[email protected])
In a message dated 4/17/2009 9:48:26 A.M. Eastern Daylight Time, [email protected] writes: where was the website that offered $150 to fill out a survery??? From: [email protected] [mailto:[email protected]] On Behalf Of [email protected] Sent: Friday, April 17, 2009 8:46 AM To: [email protected] Subject: [CMLHope] Re: Laura Vitez bio she seems ligit but I would still check wit... Hi Richard, Did you check with Novartis before doing this? I think I would if I were you. Blessings, JEANIE<3 CML WARRIOR SINCE 2004 **************Access 350+ FREE radio stations anytime from anywhere on the web. Get the Radio Toolbar! (http://toolbar.aol.com/aolradio/download.html?ncid=emlcntusdown00000003) --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
