Greetings to Everyone,

I am Jennifer Earnhart and I am a board member of the NOMID Alliance. I am also
a patient
at the NIH with the genetic mutatiion of the CIAS1 gene. My nine-year old
daughter Hallie
also has the exact same mutation. We have been a part of the study for the
cryopyrin
related diseases at the NIH for three years now and are extremely grateful for
the
opportunity to receive the care and treatment they have to offer. I know many of
you feel
the same way. My husband Tim, and myself are in the process of planning a
fudnraiser for
the NOMID Alliance. Karen Durrant has dilligently been working to compile the
information
needed to proceed on with the designing and printing of the brochures that will
be
distributed to doctors and various others across the country and overseas as
well. Once
those are completed then the distribution process will begin. I know we all
appreciate the
time and effort Karen has given to get us to this point. Thank you also to all
of you who
have had your own fundraisers to help the NOMID Allinace. Your giving spirit has
been
much appreciated. I would also like to give a special thanks to John and Kate
Barton. I
think we will all agree that they were really the "beginning" of this awareness
campaign for
NOMID and the related syndromes. The time and effort that they put into setting
up the
NOMID family site has been so beneficial to all of us. I can remember the first
time I saw
the site and I felt such a relief just to know that there were others out there
who
understood. They also have provided us with valuable information to better
educate
ourselves and others about these syndromes. The yahoo site has also been very
beneficial
to all of us. I had the privilege to meet Kate and Alex during our visit to the
NIH back in
March. Thank you John and Kate.

As many of you know the NOMID Alliance is a non-profit public charity dedicated
to
promoting awareness, proper diagnosis and treatment and improved care for people
with
CAPS ( Cryopyrin Associated Periodic Fever Syndromes). As you know these
syndromes
include NOMID or CINCA, Muckle-Wells (MWS), Familial Cold Auto Inflammatory
Syndrome
(FCAS) and a spectrum of undifferentiated periodic fevers. Our goal is to launch
an
awareness campaign targeted at doctors and nurses, which may help to improve the
rate
of earlier diagnosis and treatment of these syndromes.

We are very excited about the upcoming fundraiser. We will be hosting an "Art
Festival".
My husband's Advertising Agency, Earnhart + Friends, has been gracious enough to
host
this very special event. He and his entire team are working dilligently to make
this a
special event that will benefit the NOMID Allinace. This event is planned for
Thursday,
November 1st. We are asking local artists in our area to donate pieces of their
work for the
show. These pieces may include paintinigs, drawings, pottery pieces,
photography, etc.
We are very excited about another aspect of the festival. We would like to
feature the
artwork of some of our children with these syndromes. These pieces will be
auctioned off
as well. If you are interested in participating we would like the artwork to be
done on a
stretched canvas that is either 8x10 or 10x13 in size. We cannot go bigger than
a 10x13
for shipping reasons. You can purchase these at any of your local arts and
crafts stores.
The shipping costs of the finished canvases will be paid for by the Liberty
Group, which is
my husband's printing company. We greatly appreciate them agreeing to donate the
shipping costs. Information will be provided below with shipping instructions.
We would
also like to encourage any of you adults who may be artists, or know of artists
who are
friends, to share your talents with us. I know there are some of you out there.

There is no limit to your child's imagination. They are allowed to paint
whatever they
choose. If they would like to title the painting, please write this title on the
back of the
painting, along with you child's name, location, and date.

We thought this would be a good opportunity for our kids to get involved with
the
fundraiser and also it puts a very personal touch to the event. If you would
like to submit a
picture of your family or your child we would display that next to their
artwork. Feel free to
send as many pictures as you would like of your child or family. We would prefer
you send
these in digital format either by email or CD. Our plan is to create a slide
show to
showcase during the event. If you cannot send it digitally then you can just
mail us what
you have. You may include a brief bio if you would like. You may take the
opportunity to
tell us about your child and if you would like to tell about how your child is
affected with
these syndromes that would be fine. Any and all information would be nice to
have. We are
also going to try to include some pictures from the NIH, the Children's Inn, and
the
doctors in the slideshow. We also plan to create an online slideshow of the
event so each
of you can see your artwork on display and feel a part of that special night.

If you would like to be the one who actually buys your child's artwork ( to
guarantee that
you will own your child's artwork), then you have the oppotunity to pre-purchase
it prior
to the event on November 1st. Please let us know if you are interested in this
option. The
pre-purchase price for each child's artwork will be $200.00. If you choose not
to pre-
purchase, and your child's artwork does not sell ( which we hope this will not
be the case),
then you can post purchase your child's artwork for a minimum of $150.00. If you
plan to
pre-purchase, you will still need to ship the artwork to us. We want all
children's creations
to be on display. The pre-purchase option is a great way for grandparents, close
friends or
relatives to make a dontaion to the NOMID Alliance.

I have contacted Dr. Goldbach-Mansky about the upcoming fundraiser. She was very
excited to hear about it and that we are making plans to move ahead with the
awareness
campaign. As she said, there is a great urgency to raise awareness in regards
to the CIAS1
related syndromes. She is also going to be submitting a few of her thoughts
about the
syndromes for us to use in some informational pieces that will be distributed.

All funds raised from this event will go directly to the NOMID Alliance. The
location for the
event, the food, the shipping costs, and any other related event expenses will
be covered
by our generous underwriters.

Among family, friends, and members of the community, we will also be inviting
local
physicians from Bowling Green and Nashville. Hallie and I both have several
doctors at
Vanderbilt so we hope this will be a good opportunity to raise awareness with
them. We
will also be inviting out State Representatives and our Congressmen in
Washington, D.C. .
What a great way to get exposure with our governmental representatives. Maybe
they will
remember us when they are voting on funding for the NIH.

EVENT INFORMATION:
Earnhart + Friends Art Festival Benefiting the NOMID Alliance
Location: Earnhart + Friends in historic downtown Bowling Green, Kentucky
Date: Thursday, November 1, 2007
Time: 6:30-9:00 p.m.

ARTWORK INFORMATION:
1. Artwork should be submitted on 8x10 or 10x13 stretched canvas.
2. Completed Canvases need to ship NO LATER than FRIDAY OCTOBER 12th.
3. Shipping Costs will be covered. If you plan to participate in the event,
please contact
me via email or phone to discuss the FREE shipping information.

CONTACT INFORMATION:
Jennifer Earnhart
earnhart@...
270-781-8037 home
270-996-1218 cell

We are very excited about this event and hope that you all will be willing to
particiapte.
This event can only be successful if we all work together. We want this event to
be
successful for all the patients and families affected by these syndromes. Please
contact me
as soon as possible to let us know if you are will be participating. Thank you.
If you have
any questions or suggestions feel free to contact me.

Thank you again to Karen Durrant and all her hard work with the NOMID Alliance.
She has
had a vision for this project and hopefully we are on the road to seeing that
vision
become a reality.

I hope to hear from you all soon.

Jennifer Earnhart