http://health.groups.yahoo.com/group/FEVRnet/ Familial Exudative Vitreoretinopathy Wed, 12 Mar 2008 17:19:25 GMT James Wilkins http://health.groups.yahoo.com/group/FEVRnet/message/27 http://health.groups.yahoo.com/group/FEVRnet/message/27 Promising news from a group seeking to provide relief from retinal diseases: http://news.bostonherald.com/news/regional/general/view.bg?articleid=1078909" Thu, 07 Feb 2008 21:06:56 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/26 http://health.groups.yahoo.com/group/FEVRnet/message/26 I am passing on this letter I recieved. ... Hi Ms. Young, I came across your FEVR website and wanted to update you on our new Retina Institute at Childrens Mon, 07 Jan 2008 18:07:20 GMT trillianz1990 http://health.groups.yahoo.com/group/FEVRnet/message/25 http://health.groups.yahoo.com/group/FEVRnet/message/25 Hi Manda, It's sad that your son was born with FEVR, like myself. I can understand how he's feeling at the moment, being in dinial about his sight, but trust Fri, 04 Jan 2008 18:57:38 GMT manda stenson http://health.groups.yahoo.com/group/FEVRnet/message/24 http://health.groups.yahoo.com/group/FEVRnet/message/24 hi luke, my name is manda and i live in derbyshire in the uk, i have a son called quinn who will be 10 on feb 12th.......quinn was born with fevr also and he Thu, 03 Jan 2008 23:43:16 GMT trillianz1990 http://health.groups.yahoo.com/group/FEVRnet/message/23 http://health.groups.yahoo.com/group/FEVRnet/message/23 Hi. I'm 17 years old and have had FEVR since I was born. It's never really affected me much and I've never had much of a problem with it, up until when i was Fri, 19 Oct 2007 17:32:26 GMT Jane Ann Young http://health.groups.yahoo.com/group/FEVRnet/message/22 http://health.groups.yahoo.com/group/FEVRnet/message/22 Hi, The shooting stars are, yes, like the computer screen saver but move across my vision in a different pattern. I intend to ask my doctor what they mean in Mon, 01 Oct 2007 04:47:23 GMT gwkuma007 http://health.groups.yahoo.com/group/FEVRnet/message/21 http://health.groups.yahoo.com/group/FEVRnet/message/21 Sorry, I haven't been on the board for a long time. Our daughter was diagnosed at 8 months and then had a sceleral buckle fitted to her right eye at 14 months Thu, 06 Sep 2007 12:31:19 GMT michellebaute http://health.groups.yahoo.com/group/FEVRnet/message/20 http://health.groups.yahoo.com/group/FEVRnet/message/20 Good luck, Jane. i can't begin to tell you how much this website has helped me and my family. My 7 yo son has x-linked FEVR. we have been going to Detroit for Thu, 06 Sep 2007 12:26:46 GMT michellebaute http://health.groups.yahoo.com/group/FEVRnet/message/19 http://health.groups.yahoo.com/group/FEVRnet/message/19 hi all i haven't posted here in ages but i wanted to let everyone know that my 7 yo son- who has Xlinked FEVR- had an awesome report from Trese in July. his Mon, 03 Sep 2007 23:11:40 GMT William Hassett http://health.groups.yahoo.com/group/FEVRnet/message/18 http://health.groups.yahoo.com/group/FEVRnet/message/18 Hi Jane, Dr. Trese's office is in a building that has an attached parking garage and the hospital (we have always entered on the North end) has valet parking, Mon, 03 Sep 2007 19:40:18 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/17 http://health.groups.yahoo.com/group/FEVRnet/message/17 Hi All, My doctor talked for a long time with Dr. Trese and I will be making an appt. tomorrow to see him for a short visit. (I guess short) I can't imagine Wed, 29 Aug 2007 13:28:14 GMT William Hassett http://health.groups.yahoo.com/group/FEVRnet/message/16 http://health.groups.yahoo.com/group/FEVRnet/message/16 Dear Jane, I cannot tell you how sorry I am to hear what you are going through. Ironically, during a visit with Dr. Trese last month, I showed him a sentence Tue, 28 Aug 2007 21:56:04 GMT Christina Reed http://health.groups.yahoo.com/group/FEVRnet/message/15 http://health.groups.yahoo.com/group/FEVRnet/message/15 Hi Jane, It's Christina here and when we go to Dr. Trese in Royal Oak, we usually stay at the Travelodge on Woodward in Royal Oak. It is relatively cheap and Tue, 28 Aug 2007 21:21:59 GMT Jane Young MS http://health.groups.yahoo.com/group/FEVRnet/message/14 http://health.groups.yahoo.com/group/FEVRnet/message/14 Bill, Hi, Jane (composer of FEVER.net) here, I visited NIH 2 weeks ago and got some more FEVR Genetic papers for you if you want. I can not post them in the Wed, 08 Aug 2007 20:56:04 GMT chrreed http://health.groups.yahoo.com/group/FEVRnet/message/13 http://health.groups.yahoo.com/group/FEVRnet/message/13 Hi to all- It's Christina, mother to Hailey and Hannah who have FEVR and go to Michigan to see Dr. Trese. I have a quick question- Does anyone know of any