Dear Colin and family,

I hope all goes well for Tilly and her operation, and we will keep you
all in our thoughts and prayers at this time. Our sympathies to your
family, and I hope that a trip to DC will be helpful to your
mother-in-law at this time.

To all families,

As far as the fundraiser, I am so excited about it, and Seth is
looking forward to getting an art canvas to make his painting soon!
Please consider participating in this project. I have met many of
you, and your children and know that there are some talented artists
out there! Alice, Tiffanie, Jessie (Miranda's sister), Kate, and many
others are gifted artists. I think people would love to see your work
as part of the show. We are also going to ask some of our artist
friends to contribute pieces too, and my husband will finally have a
deadline and excuse to do some fine art again, since he used to do a
lot of commissioned pieces and paintings before he decided to go into
graphic design, and life got too busy.

I would like to thank all of you that have donated to The NOMID
Alliance, and to the Earnharts for their generous help in creating and
starting this fundraising event. Also, to the Griffins for their
amazing fundraiser last spring, which has helped us gather more funds
for the awareness project.

I have completed the initial design and content of the CAPS brochure
(Cryopyrin_Associated Periodic Fever Syndromes) which includes info
about NOMID, FCAS and MWS, and the NOMID Alliance board, medical
advisors and other medical doctors are reviewing it right now. We
hope to have it published and ready to distribute before this
fundraiser, and some other events to increase awareness. It will be
available to all of you as well, to share with doctors, families,
teachers, etc. I hope that it will be a valuable resource and
increase awareness, and early diagnosis of these syndromes fo r more
people.

To Michelle Griffin, I will be sending out the brochure to all the
people that donated with your fundraising event(I got their names off
the checks) with receipts for their donations and a great big thanks
once it is printed. I thought they may enjoy seeing where their money
went, and know it went to a good cause. Thanks again!

All the donated funds that come to The NOMID Alliance are
tax-deductible to the fullest extent of the law in the US, since we
are a 501 (c)(3) non-profit recognized by the IRS. So, any donated
work for the event will also be tax-deductible, but people doing art
will have to fill out a form for their taxes to claim artwork
donations. I am going to have this available to you all soon, and to
the Earnharts too. No one with The NOMID Alliance is paid, we are all
volunteers so all the funds go directly into our awareness programs.

After the event, we should post pictures on the website of the event,
for everyone to see! I think it will be a wonderful success,and we
need all of you to help come up with art pieces by your children,
and/or yourselves too to have at the auction. Since we are such a
rare group, every one needs to do their share to have a number of
pieces at the auction that can be sold. People need to see the
spectrum of individuals with this syndrome, and the potential our kids
have in this world, despite their condition. The kids will be very
proud too.

Thanks,

Karen Durrant