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Messages 1 - 27 of 27   Oldest  |  < Older  |  Newer >  |  Newest
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1
Hello All Old fevr.net message board members, unfortunately the old message board was taken down by an invasion of a hacker to spread spam E-mail. There goes...
Jane Young MS
young1_fevr
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Feb 27, 2007
2:32 pm
2
The NIH Trial Started 5 years ago has developed and changed. NEW! - Your doctor can now send blood to the National Institutes of Health for testing of 2 FEVR...
Jane Young MS
young1_fevr
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Feb 27, 2007
2:54 pm
3
Anyone who has knowledge of any current studies or reading concerning FEVR, please pass along any information you might have. Thank you very much. Bill Hassett...
whassett
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May 22, 2007
6:53 pm
4
The current genetic studies are posted on the FEVR web site http://fevr.net CLINICAL TRIALS. The NIH study has changed throughout the years. You can now join...
Jane Young MS
young1_fevr
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Jun 9, 2007
5:14 pm
5
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the FEVRnet group. File : /FEVR Article...
FEVRnet@yahoogroups.com
Send Email
Jun 9, 2007
5:22 pm
6
Hello, This email message is a notification to let you know that a file has been uploaded to the Files area of the FEVRnet group. File : /Science...
FEVRnet@yahoogroups.com
Send Email
Jun 9, 2007
5:29 pm
7
Hi to All- My name is Christina and I am new to this group. My twin daughters Hailey and Hannah who are 1.5 yr old both have FEVR as well as other ...
chrreed
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Jun 10, 2007
8:19 pm
8
Dear Christina FEVR is constantly reported in the medical and scientific literature as a very rare disorder. However no official figures have ever been ...
Carmel Toomes
carmeltoomes
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Jun 11, 2007
7:26 am
9
Hi Everyone- Just thought I would post some photos of Hailey and Hannah...my Minnesota twins...Christina...
chrreed
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Jun 14, 2007
10:05 pm
10
I am really new to this my 2 year old daughter just received NEVR as a provisional diagnosis after the discovery of a retinal detachment. We still do not know...
michael.harris2
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Jul 4, 2007
10:41 pm
11
Thank you so such, the NEVR was a typo, my daughter has a preliminary diagnosis of FEVR based on apartially detached retina in her right eye.We do not have a...
michael.harris2
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Jul 19, 2007
4:43 pm
12
The earlier the better. My daughter is now almost 10. She was not diagnosed until she was 4 yrs and 3 months. The earlier she is diagnosed...the better you...
Amber Kilgore
aliciakaitly...
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Jul 28, 2007
10:45 pm
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...
chrreed
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Aug 8, 2007
8:56 pm
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...
Jane Young MS
young1_fevr
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Aug 28, 2007
9:21 pm
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 ...
Christina Reed
chrreed
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Aug 28, 2007
9:56 pm
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...
William Hassett
whassett
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Aug 29, 2007
1:28 pm
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...
Jane Young MS
young1_fevr
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Sep 3, 2007
7:40 pm
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, ...
William Hassett
whassett
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Sep 3, 2007
11:11 pm
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...
michellebaute
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Sep 6, 2007
12:26 pm
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...
michellebaute
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Sep 6, 2007
12:31 pm
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...
gwkuma007
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Oct 1, 2007
4:47 am
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...
Jane Ann Young
young1_fevr
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Oct 19, 2007
5:32 pm
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...
trillianz1990
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Jan 3, 2008
11:43 pm
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...
manda stenson
mandshere2000
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Jan 4, 2008
6:57 pm
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...
trillianz1990
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Jan 7, 2008
6:07 pm
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...
Jane Young MS
young1_fevr
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Feb 7, 2008
9:06 pm
27
Promising news from a group seeking to provide relief from retinal diseases: http://news.bostonherald.com/news/regional/general/view.bg?articleid=1078909"...
James Wilkins
jameswilkins
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Mar 12, 2008
5:19 pm
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