[tri-med] "Noah's Never Ending Rainbow"

I would like to introduce myself, my name is Dana Tehako-Esser.  My nephew,
Noah Thomas Campbell, died on May 14, 2001 of Trisomy, specifically partial
Trisomy of 2p+ (13-23), at the age of 7 months old.

Effective November 1, 2002, I, with the support and blessings of my family,
incorporated "Noah's Never Ending Rainbow", a non-profit charitable
corporation, in memory of Noah.  After receiving the filed, stamped copy of
the Articles of Incorporation from the State of Wisconsin, I filed Form
SS-4, Application for an Employer Identification Number (EIN), and have
received our EIN Number of 82-0576254.  My last major filing is Form 1023
and that will be completed after our strategic planning session which I am
about to address.

On Saturday, March 1st, 2003, the initial Board of Directors, which is
currently four family members, will be meeting with two consultants to
create and concrete a strategic plan.  I, personally, believe that the
strategic plan is the most vital instrument to this or any other
organization.  This strategic planning session is to impact the future of
"Noah's Never Ending Rainbow".  The vision will energize and drive the
organization forward.  A good strategic plan helps propel an organization
forward and maximize its impact.

We are opening this strategic planning session to all interested parties
which will or may include doctors, nurses, business associates/colleagues,
and Trisomy parents who are "visionaries" or would benefit from this
organization.  If you are near Kenosha, Wisconsin, we welcome you to attend
this strategic planning session.your ideas, needs, wants, and experiences
matter.  Even if you can't attend, you can e-mail me your ideas, experiences
and visions prior to March 1st as it will be an immense help in the
development of "Noah's Never Ending Rainbow".

Ultimately, "Noah's Never Ending Rainbow" will pertain to children/adults
inflicted with Trisomy and the families dealing with this complex
disease/syndrome.  We will be concreting and confirming the goals/objectives
on March 1st so things may change slightly but, ideally, we hope to pursue
the education/awareness of Trisomy, support research and educational
lobbying efforts, help families struggling with the financial burden of
having a special needs child, and potentially having a "retreat" for those
that have lost a child to this devastating syndrome.  Through my initial
research, this will be the first national organization of its kind not
acting as a "support group".  It is our hope to collaborate with and support
existing Trisomy organizations.  We have no intent to duplicate their
efforts.  We applaud their efforts and look forward to referencing,
collaborating and supporting them.

As you can probably tell, Noah's short life had a profound impact on me.  I
knew I had to do something to keep Noah's memory alive.  Collectively, my
family and I felt that there was a lack of information and education
regarding Trisomy and limited resources available.  Taking the lead on
developing and implementing "Noah's Never Ending Rainbow" was something I
needed to do.  My heart was telling me it is the right and needed thing to
do so I did it!  I was fortunate to have the knowledge and experience with
developing and implementing an organization of this caliber as that is what
I had done the last three years of my life with the organization of Friends
of Celiac Disease Research.  I have since departed from my Executive
Director position at Friends of Celiac Disease Research to pursue what is in
my heart, "Noah's Never Ending Rainbow".  It is a big sacrifice but I know
that Noah is looking down upon us and is smiling.  The sacrifice is well
worth it!

Don't forget, if you have ideas, experiences or visions that you would like
to share for our upcoming strategic planning session or if you can attend
personally, please contact me via e-mail OR, if you would like further
information regarding "Noah's Never Ending Rainbow", including how to become
a volunteer, upcoming fundraising events, or to make a donation, please
contact me via e-mail as well.

Thank you for your time and support.

Angel blessings to all,

Dana Tehako-Esser
President & Chief Executive Officer
Noah's Never Ending Rainbow
E-mail/  coreydana@xxxxxxxxxxx

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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