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nomidsyndrome · N.O.M.I.D/C.I.N.C.A. Syndrome
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Reply | Forward Message #425 of 2363 |
Dear John, Kate and Alex,
       I hope Alex begins to feel better with the Anakinra drug.  It sounds very promising.  Zachary has a great support group and I will ask them to include Alex in their prayers.  I am very anxious to get started with the new treatment.  Zachary, now 19 continues to regress physically.  It is amazing how he is so optimistic after everything he has been through.  He keeps saying "Mom not if it will work, but when it works!" If Kate has anything she can pass along to us, that she feels would be beneficial, I would greatly appreciate it.  Take Care and again thank you for putting together this wonderful web-site.

Jan


Mon Sep 8, 2003 5:42 pm

jand71054
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Message #425 of 2363 |
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Dear John, Kate and Alex, I hope Alex begins to feel better with the Anakinra drug. It sounds very promising. Zachary has a great support group and I will...
jan71054@...
jand71054
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Sep 8, 2003
5:42 pm

Hello to you all. Well, let me first say that the protocol will start as soon as they have a number, but it has all been approved by the FDA and as soon as ...
kate77494
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Sep 13, 2003
4:56 pm

Hi Kate, That is great news about Alex, I hope all is going well since you wrote this mail. can you confirm the name of the drug Alex is trying, also if it...
karen moore
karenmoore30
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Sep 20, 2003
4:49 pm

Hi Karen. thanks for the words. The new medication works on the IL-1 pathway which is responsibe for inflamation and it works very quickly. it is a daily ...
John and Kate Barton
kate77494
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Sep 20, 2003
11:43 pm

WILL SOMEBODY PLEASE ANSWER MY EMAILS?????? I have sent off at least 3 and am getting no reply. Maybe they have gotten lost or somthing somewhere between me...
JMDUCA@...
jmduca
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Sep 20, 2003
8:25 pm

Jacie, Sorry to hear about your grandaughter.I hope that you can get her up to the NIH soon. I think that a few of the children have shunts and It would be ...
John and Kate Barton
kate77494
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Sep 20, 2003
11:29 pm

Hi Jacie--My name is Traci Anderson. Our family lives in Grand Rapids Michigan. One of my 4 1/2 year old twin daughters, Kennedy, was also diagnosed with...
Traci Gundy-Anderson
putzztwins
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Oct 4, 2003
3:05 am

THANKYOU SO MUCH! Jacie, Sorry to hear about your grandaughter.I hope that you can get her up to the NIH soon. I think that a few of the children have shunts...
JMDUCA@...
jmduca
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Sep 21, 2003
8:33 pm

Kate, Hi I tried to reach you before you left for NIH. Hope all is going well. Let me know. Dr. Caryn...
cococohan@...
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Sep 21, 2003
10:27 pm

Dear John Kate and Alex, I'm glad you received the photo and of course do share it with the others. We had to take Zachary off the Anakinra, because he...
jan71054@...
jand71054
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Oct 3, 2003
2:44 pm

Thankyou Traci and Karen Durrant . We are neighbors not more than 45 minutes away from one another. You both are in Grand Rapids (I'm in Muskegon) Erika has...
JMDUCA@...
jmduca
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Oct 4, 2003
3:50 am

Hi Jacie, I think you have me and Karen Durrant mixed up. I think Karen live way out west. Traci and I live in Grand Rapids. You had sent us an email to...
TERRY & CAMILLE'S MAIL
custer502000
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Oct 4, 2003
2:42 pm

So sorry . Thanks for letting me know. ~Jacie~ Hi Jacie, I think you have me and Karen Durrant mixed up. I think Karen live way out west. Traci and I live in...
JMDUCA@...
jmduca
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Oct 5, 2003
2:29 am
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