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nomidsyndrome · N.O.M.I.D/C.I.N.C.A. Syndrome
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Sherri   Message List  
Reply | Forward Message #389 of 2363 |
RE: [nomidsyndrome]NIH TRIP

Jacie, Have you phoned Janet Jones to make an appointment. the reason I ask
this is because the NIH are not able to contact you .You have to ask if your
child can come to be tested.
With regards to the Muckle-Wells and NOMID syndromes I was told that those
families where the mutation has gone from one generation to another that
this is more likely to be Muckle-Wells than NOMID. And that this mutation
occurs accidently in NOMID and that it is not classed as auto-somal. Muckle-
Wells is!

The Children's Inn is a wonderful place infact I only got to see it the
night before we flew home but I would have loved to stay there the week. The
staff are wonderful and because most if not all are volunteers they really
make you feel wanted.The children are treated like kings and Queens.

Hope all is going well with your little angels. Love
Katexxxxxxxxxxxxxxxxxxxxx





Wed Apr 9, 2003 2:07 pm

kate77494
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Message #389 of 2363 |
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Hello!! I have not heard from anyone, and I just want to know that things are okay. Things are alright here, nothing spectacular. Miranda is having a hard time...
Mintcreek
mintcrik@...
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May 8, 2000
2:16 am

HELLO EVERYONE!! I am just wondering how everyone is, I have heard from anyone! Hope things are well with all of you. I want to send a special birthday out to...
Mintcreek
mintcrik@...
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Aug 12, 2000
6:28 am

Hi Everyone, Sorry I haven't written, been realllllllly busy! First of all, I want to wish Kate and a very special birthday!!!!!! Anyhow, things are ok here,...
mintcrik
mintcrik@...
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Feb 19, 2002
3:27 am

Hi Everyone! Hope all is well with all of you, things are okay here, everything stays the same. Miranda is having a terrible time with her eyes today. What...
Jim & Sherri
mintcrik@...
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Apr 2, 2003
3:21 pm

Dear Sheri, I am sorry to hear that Miranda is having such trouble with her eyes. I have been thinking a lot about the Bartons, and wonder how their trip to...
sfokaren2003
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Apr 2, 2003
4:03 pm

Hi to all and sorry for not writting sooner but our lovely computer is on the blink.We arrived in Washington on the 13th march to the wonderful noise of...
Kate and John Barton
kate77494
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Apr 8, 2003
6:55 pm

Thankyou Kate for the update. We are so anxious to get our grandaughter to go to NIH. We anxiously await the call. I am so glad that you informed us (and very...
JMDUCA@...
jmduca
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Apr 9, 2003
1:33 am

Jacie, Have you phoned Janet Jones to make an appointment. the reason I ask this is because the NIH are not able to contact you .You have to ask if your child...
Kate and John Barton
kate77494
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Apr 9, 2003
2:07 pm

Hello Kate, My grandaughters rhumatologist is getting in contact with Janet Jones and then she (the doctor) will notify our daughter. We all have so much to...
JMDUCA@...
jmduca
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Apr 10, 2003
4:21 am

Jacie, My understanding of the disease is that with NOMID you also get the meningitis and that no other member shows signs of the same mutation. Basically it...
Kate and John Barton
kate77494
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Apr 10, 2003
5:37 am

Dear friends, We are back home from our trip to the NIH, and visiting relatives. It was worth thr trip, and very helpful for Seth. Everyone was so nice, and...
sfokaren2003
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Apr 21, 2003
8:15 pm

Hello to all! I know it has been too long since I've been here! Sorry!! :( Anyhow, Karen thank you so much for the brochures! I have handed all of mine out...
sherrip12s
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May 4, 2008
12:54 am

Sherri, That is all really interesting)especially being a medical person). Let us know if the surgery helps. ... Anyhow, ... in ... we ... he ... her ... ...
mmkcgriffin
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May 4, 2008
2:39 pm
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