From doyleew@... Thu Mar 11 12:22:18 2004 Return-Path: X-Sender: DoyleEW@... X-Apparently-To: breathofhope@yahoogroups.com Received: (qmail 18816 invoked from network); 11 Mar 2004 20:22:17 -0000 Received: from unknown (66.218.66.172) by m11.grp.scd.yahoo.com with QMQP; 11 Mar 2004 20:22:17 -0000 Received: from unknown (HELO imo-m23.mx.aol.com) (64.12.137.4) by mta4.grp.scd.yahoo.com with SMTP; 11 Mar 2004 20:22:17 -0000 Received: from DoyleEW@... by imo-m23.mx.aol.com (mail_out_v37.4.) id r.88.5859e03 (15898) for ; Thu, 11 Mar 2004 15:22:07 -0500 (EST) Received: from aol.com (mow-d15.webmail.aol.com [205.188.139.131]) by air-id09.mx.aol.com (v98.11) with ESMTP id MAILINID91-3e1a4050ca6e10; Thu, 11 Mar 2004 15:22:07 -0500 Date: Thu, 11 Mar 2004 15:22:06 -0500 To: breathofhope@yahoogroups.com MIME-Version: 1.0 Message-ID: <12B433D9.4522734F.0016E911@...> X-Mailer: Atlas Mailer 2.0 X-AOL-IP: 12.4.255.195 Content-Type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit X-eGroups-Remote-IP: 64.12.137.4 From: doyleew@... Subject: Medical Research - Dawnn & all X-Yahoo-Group-Post: member; u=7232406 X-Yahoo-Profile: doyle_propst I wanted to clarify this - I do want medical professionals to be part of this but we can try to get them involved as we or are getting established as a corporation or as a 501 c 3. They are usually more excepting of an entity that has already become "established" and I believe that Breath of Hope will offer them a look at us organized and serious. Not blubbering emotional patient's parents. Our doctors never looked at us that way but I know sometimes some do. Have any of you been to or taken someone to the doctor in the last 6 months (I bet we all have)? You should have signed a form and been given this NEW medical form. In general, the Federal Government stepped in and said that hospitals, doctor's offices could not sell name or info - nor could insurance companies to other industry. This had been going on. In a nutshell, remember those forms and stuff we filled out for that other entity we are/were involved with CDH? We should have all received the same sort of form from it's President/CEO because of the information that is requested. See, we could do one of two things - one - inform all our friends, members and so on of Research studies going on through out the US/World for CDH and let our members contact them. Or we could just have those who wish their info sent to these hosptials and labs to them. This is something we can decide on later. Kat can you contact Mel - I really think she could be helpful with that! I will try calling her on this too. It is a touchy issue now because of all the things that have happened to have the Federal Government step in. I'm going to give you an example. About 2 years ago, we got a phone call from the University of Virginia - a Child Development area. Brian was home and they called and asked "How Cecilia was", now these people didn't mean harm and probably wanted us to participate in a very worthwhile study. They could have received our names from her medical records, from us donating to UVA in her memory and we all know humans make mistakes and sometimes they miss information. We were not offended - but think about how many others might have been and probably raised a huge fuss. Sometimes it is nice for Brian and I to have someone ask us how Cecilia is doing. (We both imagine what she is up to and that gives us a smile.) This is one reason why they have made Medical Research and Medical records so regulated now. A doctor's office can NOT give out your information, nor can an insurance company anymore. In fact what someone else was/is doing in the Research Surveys from that other entity - might be illegal now. I'm not sure. If anyone else has other information on this or knows how we can participate in research - let me know - or if you have other ideas.... Elizabeth, Proud Mom of Cecilia Winn Propst, 11/2/99 - 12/10/99, LCDH, O2, N0, Gortex Patch Repair, Silo Patch to final Closure, ECMO 32 days (UVA's record holder), Renal Failure, Hemophiltration via ECMO, Hemophiltration via CVH machine - youngest patient ever on, Pulmonary Hemorrhage. (\o/) /_\ http://hometown.aol.com/doyleew/myhomepage/