Dear Friends,

I have good news-the NOMID alliance got the grant from Regeneron this
summer to fund the printing/mailing of our brochure about NOMID, FCAS
and MWS (CAPS syndromes-which stands for Cryopyrin-Associated Periodc
Fever Syndromes) and we have been busy getting it ready for printing soon.

I am really hoping someone is willing to share a really clear photo of
their child with NOMID as an infant-newborn would be the best) with a
really pronounced rash. Alex Barton's infant photo on the
nomidsyndrome.com site is awesome! Take a look on that site to see
what he looked like at a few days old.

Kate, would you be wiling to send us the file in high resolution for
printing? We will have a photo release to sign for you too. No names
will be used with the photos, but since it is online, It's already out
there in the world. I have searched for photos in medical jounrals,
etc. and no one has such a great phto of a baby in the neonatal period
that I have seen better than Alex's, but maybe some of you have
incredible ones too! Please consider sharing it with us for the
casue, it will help countless others to get help and diagnosis sooner.

If anyone else has photos like that, we would love to see them, and
use them if possible for the borchure. Michelle Griffin, I think you
said Kieran looked like that at birth too. Any photos?

I would also really like to have a clear, close up photo of NOMID
enlarged kneecaps, if anyone has a picture like that. I can crop in
on the knees too. I am trying to avoid using any photos of people
beyond the neonatal, early infancy age of faces, since they would be
more easily identified, so any photos will be cropped to feature the
knees, rash, etc and not the face. I have one of Seth's back rash
(seen on the nomidalliance.net site) that is a good example of showing
the rash, not the face.

It would be very helpful for the cause, since these brochures will be
mailed to rheumatologists, dermatologists, neaonatologists,
alllergists, and neuologists all over the US, and the world over the
next year. they will also be handed out to pediatricians this fall at
the AAP convention here in San Francisco at the end of October. We
really need your photos soon, so we can get this printed right away.

The photos I took of Seth as an infant were usually on his "good rash"
days, not flares, and now I wish I had taken some of the bad rash
days! He also was preemie, so I had 2 shots of betamethasone before
he was born (when we were trying to keep him inside me, before his
heart rate fell) which is a strong corticosteroid to mature his lungs.
His rash did not come on until about a week after he was born and in
the NICU, and then got more pronounced by the second week. I think
the strong doses of steroids I was given kept it subdued, but his
labs, conjunctivitis, and other symptoms were present at birth,
although no one knew what he had at the time.

Please consider helping us, since this information will help many
other undiagnosed, and suffering patients with these syndromes to get
treated correctly,and sooner.

There will be lots of brochures to be used by all of the families, so
people can share with their teachers, doctors, etc. and the community
if you do fundraising. There is a detailed chart in the center that
compares NOMID, FCAS and MWS to other periodic fever syndromes, which
will also be very helpful with improving awareness and diagnosis of
these syndromes. Once it is printed, we plan to offer it to all of you
to share with anyone you desire.

ALso, please look for news in the next few weeks regaring a very
exciting fundraiser for the NOMID Alliance (to help further fund our
NOMID-FCAS-MWS awareness campaign) on this site, or to your personal
e-mails soon! Jennifer Earnhart is leading the fundraiser. I will
let her tell you all about it, but I am so excited about it that I
have to share one little part of it now! We will need your
involvement in having your child create an original work of art on a
canvas art board (we are working on getting this donated) to be
auctioned off at the event. I know that many of your children are
quite talented artists (I was blown away with Tiffanie's drawing and
Alice Leiffers painting skills when we met them) so I hope they all
will be willing to help soon. Anyone interested can help do artwork,
donate, or find others that are willing to donate pieces to the
project. Also, siblings are welcome too! The NOMID Alliance is a
tax-exempt 501 (c)(3) non-profit, so all donations are tax deductible
if you pay US taxes.

Dori, good luck on your upcoming NIH trip, and also Fran. Dori, we
need to have a meeting for the NOMID Alliance-did you get my e-mail
last month? We want to get your input on these projects. Let me know
what time is good for you to teleconference, and you too Jennifer!

Thanks,

Karen Durrant