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Amy
Clugston,
President / Treasurer
Otsego, Michigan
amyclugston@undiagnosed-usa.org
Katie Wright
Vice President / Treasurer
Gig Harbor, Washington
kwright@undiagnosed-usa.org
Andrea Knob, Secretary
Boston, Massachusetts
andrea.knob@gmail.com
Julie Schwab, Board Member
Lebanon, Ohio
jschwab547@yahoo.com
Stephanie Cross, Board Member
Lacey, Washington
babyjessica06@gmail.com
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September 2001 -
After searching high and low for some kind
of support for herself and her daughter, Amy
Clugston started a e-mail support group and
website for families of children with
undiagnosed conditions. |
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September 2003 -
Amy Clugston learned of SWAN which
originally started out in the United Kingdom
several years before. They had 800 members
at the time and were getting interested
families internationally. They were looking
for people to start branching out into
different countries. |
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December 2004 -
We sent out our first newsletter. |
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July 2006 -
Gathered a few people together to start the
process of becoming a tax exempt
organization. This was also our start of
regular board meetings. |
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October 2007 -
We received our approval from the IRS for
being tax exempt under 501(c)(3). Which goes
back to September 2006 when the first paper
was filed. |
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We are all
about! |
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Mission
We are a nonprofit
tax exempt 501c3 organization that advocates for children and
young adults who have syndromes without a name.
We offer support, advice and information on the
challenges that families face when there is no
diagnosis. We also advocate for changes in the
medical community that will benefit undiagnosed
individuals.
Purpose
We
advocate
for
-
awareness/recognition by medical
community, education system, social
services, general public
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more
dialogue within the medical
community with respect to
undiagnosed cases
-
increased continuity of care
among/between specialists and
primary care physicians
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improving the diagnostic process by
attempting to participate in/create
a database in order to make
diagnostic connections
-
potentially new programs to protect
children/families without a
diagnosis from "falling through the
cracks" and to allow them to access
appropriate services
We
provide
support
to
-
address the lack of information
families have without a diagnosis
-
offer
empathy/understanding/connections to
other families
-
motivate and empower
parents/families to advocate for the
best heathcare/services for their
child
-
we
help to address psychosocial
concerns such as feelings of
isolation, guilt, helplessness,
frustration, emotional distress,
etc.
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