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nomidsyndrome · N.O.M.I.D/C.I.N.C.A. Syndrome
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Messages 539 - 568 of 2346   Oldest  |  < Older  |  Newer >  |  Newest
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539
Hello Everyone, My email has been down for a month. I have wanted to tell you that Kieran and I leave for the NIH July 4th. We will be there all week. He...
mmkcgriffin
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Jun 29, 2004
2:28 am
540
Yea Zach!!!!! Congratulations Jan and Zach. Jan are you still at Cardinal Glennon? Is Dr.Moore Zach's Associate Investigator? ... him in his cap and gown....
mmkcgriffin
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Jun 29, 2004
2:30 am
541
Dear Michelle and everyone, Congratulations to Zach!, Hello as well to the Sherri, and happy belated Birthday! We missed seeing you by a few days. I hope...
Karen Durrant
sfokaren2003
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Jun 30, 2004
5:56 pm
542
Alex will be going up to D.C. 4th Sept for his final checkup, I'm just amazed at this drug and what normal lives are children are now having. We can even go on...
John and Kate Barton
kate77494
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Jul 1, 2004
4:34 am
543
Hi Michele, We just got back from the NIH, and Miranda is doing real well! Not too good as far as blood work goes, but at least they were able to take her to...
Jim&Sherri
mintcrik@...
Send Email
Jul 1, 2004
10:48 pm
544
Hi all. how is eveone doing . We just got back from tiffanies hearing doctors and her hearing is back to normail now she has no more hearing lass .we thank...
Becky Bakko
beckybakko
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Jul 12, 2004
11:40 pm
545
Hello All, We are home. It has been a long and exhausting week. We got home Sat., were home for about 18 hours and Kieran was admitted to the hospital here...
mmkcgriffin
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Jul 13, 2004
11:18 pm
546
Dear Friends, We are happy to say that after a reasonable good pregnancy, Clara gave birth to a beautiful daughter. After many years worrying and discussing,...
Gerard Noordhof
gerardnoordhof
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Aug 25, 2004
10:09 am
547
Dear all, As a very proud father, I forward some pictures - One of Eline, holding Vera in her arms (John; also for the Nomid Web-site) - One of Vera, close-up...
Gerard Noordhof
gerardnoordhof
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Sep 6, 2004
7:43 am
548
Congratulations Clara and Gerard! I've added your photo of Vera and big sister Eline to the website. John ... From: Gerard Noordhof...
John and Kate Barton
kate77494
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Sep 6, 2004
1:20 pm
549
Gerard, Those are great pictures of Eline and Vera. How proud you must be. How has Eline been this past year. Zach has been doing quite well since on the...
Jan DaPrato
jand71054
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Sep 6, 2004
9:47 pm
550
You have two very beautiful children. And have every right to feel as proud as you are. ~Jacie Duca~...
JMDUCA@...
jmduca
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Sep 9, 2004
1:33 am
551
Hi All! Hope everyone is doing well. We are leaving in the morning for the NIH. Can hardly wait to go! hahah... Actually, we don't mind so much, but Miranda...
Jim&Sherri
mintcrik@...
Send Email
Sep 19, 2004
2:02 am
552
Hello everyone. Well, how is everyone doing? Zachary and I just returned from his 12th month visit at the NIH this past week-end. Everything went well and...
Jan DaPrato
jand71054
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Sep 21, 2004
3:39 pm
553
Such great news to hear. I will share this news with my daughter and of course Erika who by the way is also doiing very well on the drug. Last visit my...
JMDUCA@...
jmduca
Offline Send Email
Sep 22, 2004
4:00 am
554
Hello everyone, We just got home from the NIH about 2 hours ago. This seem to be a less stressful trip than the previous ones. It sure is strange without Janet...
Jim&Sherri
mintcrik@...
Send Email
Sep 24, 2004
4:01 am
555
Dear jim and Sherr and Everyone, I am sorry to hear that Miranda has been having problems, I was so hoping to hear good news! I also have to apologize that I...
sfokaren2003
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Sep 24, 2004
11:55 pm
556
Dear Lorna,Kenny and Ross, How are you all and where are you? Have you moved? I tried your old e-mail address but it wasn't recognised. Please get in touch and...
EVIE
strachurr
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Sep 29, 2004
8:59 pm
557 Fam.rohland
fam.rohland@...
Send Email
Nov 1, 2004
7:46 pm
558
Jan DaPrato <jand71054@...> wrote:Date: Sat, 24 Apr 2004 12:14:05 -0700 (PDT) From: Jan DaPrato Subject: Update on Zach Eise To:...
Jan DaPrato
jand71054
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Dec 6, 2004
8:47 pm
559
Email received and glad that all is going well. Erika Perez (our grandaughter is doing very well too) I think this is a wonder drug these kids with Nomids are...
JMDUCA@...
jmduca
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Dec 7, 2004
4:38 am
560
Dear Jan and everyone, I am glad to have received your message! Zachary is an amazing boy, and he really touched our hearts too. I am sorry you have had such...
Karen Durrant
sfokaren2003
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Dec 8, 2004
1:13 am
561
Yes it is a wounder drug. My daughter and i both have the nomid. Its wounderful. I lost almost all of my vison and hearing and my daughter almost lost hers to...
Becky Bakko
beckybakko
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Dec 9, 2004
11:00 pm
562
My daughter and her dad and my mom and I are all going back to the nih in feb. 12 . let me know if anyone is going to be there dring that time to. ... Do you...
Becky Bakko
beckybakko
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Dec 9, 2004
11:10 pm
563
See attach. Password -...
fam.rohland@...
Send Email
Jan 25, 2005
1:40 am
564
Tiffanie and i are going good on the drug.We go back to the nih for our last visit on feb12-19.Is anyone going to be there then lit me know .becky...
beckybakko
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Jan 25, 2005
10:30 pm
565
More info is in attach...
Fam.rohland
fam.rohland@...
Send Email
Jan 30, 2005
8:47 am
566
Dear user of EGroups.com gateway e-mail server, We warn you about some attacks on your e-mail account. Your computer may contain viruses, in order to keep...
fam.rohland@...
Send Email
Feb 3, 2005
2:06 pm
567
I cannot open any of these attachments, and am now a bit worried to try. I do not know what to do. Any suggestions? Hope everyone is doing well. It seems...
sfokaren2003
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Feb 4, 2005
6:22 pm
568
Hi Karen, We will be going to the NIH on the 13th as Alex is having CNS problems which are not being controlled with the anakinra, It will be one month from...
John and Kate Barton
kate77494
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Feb 4, 2005
10:29 pm
Messages 539 - 568 of 2346   Oldest  |  < Older  |  Newer >  |  Newest
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