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How We Began
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.
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.
December 2004 -
We sent out our first newsletter.
July 2006 -
Gathered a few people together start the
process of becoming a tax exempt
organization. This was also our start of
regular board meetings.
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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Our Board of
Directors
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Amy Clugston -
President / Treasurer
I live
in Otsego, Michigan with my husband
John and 3 children; Lorna age 11,
Jadon age 7 and Cloey age 3. I have
been a stay at home mom since Lorna
was born, she was born with many
issue affecting her growth and
development. She has many unique
characteristics with no overall
diagnosis or an undiagnosed genetic
condition. I have volunteered in
many aspects of my community. I have
been a parent representative for my
Local Interagency Coordinating
Council for Early On for the past 8
years. It has been 6 years since I
became a Girl Scout Leader for my
daughters troop. I have volunteered,
been on an advisory committee and am
currently a Board of Director for
Parent to Parent of Southwest
Michigan. I have volunteered and
held a position on my kids school
PTO. For a few years I have been a
Den assistant for my sons Cub Scout
Den.
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Picture Soon! |
Lesley Bennet -
Vice President / Secretary
I live in Stamford, Connecticut
with my husband, John, our 2
children and 2 dogs. My son,
Sean, is currently attending
college in Michigan and my
daughter Kelly is a special
needs child. Kelly is 18 and
has an “undiagnosed”
neuromuscular disorder and
numerous orthopedic, GI, and
allergy related problems. Due
to Kelly’s numerous
hospitalizations and doctor’s
appointments, I currently work
at home as a freelance medical
(technical or regulatory) writer
and consultant. After
graduating from the University
of Michigan with a degree in
biochemistry degree, I worked in
clinical and research
laboratories while pursing a
master’s in immunology. I am a
trained laboratory professional
who keeps current in the fast
paced biotechnology world by
attending graduate certificate
programs in stem cell research,
molecular (genetics)
diagnostics, and pharmaceutical
regulatory affairs. I am a
member of the American Medical
Writers Association, Regulatory
Affairs Professionals, and
several medical laboratory
associations. Since one of my
passions is helping special
needs children and their
families, I work as a school
IEP/504Plan mentor and as a
volunteer for patient advocacy
groups representing patients
with GI, food allergy, and
UNDIAGNOSED disorders.
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Picture Soon! |
Ashley Page -
Treasurer / Secretary |
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Michelle Maleski |
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Picture Soon! |
Andrea Uscinski |
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Heather Long |
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Mary Elizabeth
Parker, PT, MS,
Duke University 1991
Medical College of Virginia 1995
Texas Woman’s University PhD ABD
2008
Since
returning to Austin, Texas from
Trumbull, Connecticut in 2005 Mary
Elizabeth has been teaching at Texas
State University-San Marcos in the
Department of Physical Therapy. In
the fall she became assistant
professor in a tenure-track position
as she hopes to complete her PhD in
physical therapy in May 2008.
Currently she is a doctoral
candidate at Texas Woman’s
University and her dissertation
focus is differential diagnosis in
pediatrics. This year she passed her
clinical specialist exam in
pediatric physical therapy and is
now nationally certified.
Mary
Elizabeth continues her clinical
practice through a local company in
Austin, Little Tesoros Therapy
Services, LLC. She is again working
for/with many therapists that worked
for her in her first Austin
experience…and she loves it! Without
the frustrations of management she
can enjoy her patient care. Mary
Elizabeth specializes in medically
fragile children and children
without definitive diagnoses.
In her
leisure time she does respite care
for a local adoption agency,
Marywood Family Services. It is not
unusual to see her on the Hike and
Bike/Lady Bird Trail with a stroller
in tow. Her colleagues at the
university have also gotten used to
the sounds of infants in her office,
and her students enjoy the
one-on-one interaction with the
children as they learn neuroscience
and pediatric physical therapy.
Recently Mary Elizabeth has
‘adopted’ two new rescue puppies as
she lost dear Chipper prior to her
move from Connecticut. Bella and
Hannah Grace now join ‘Grandma’
Anna.
In
addition, Mary Elizabeth is on the
Board of Directors at Sammy’s House,
a daycare for special needs children
that also takes care of typically
developing children. Her Chi Omega
Alumnae group worked to renovate the
new home of Sammy’s House and raised
over $10,000 for one room which
included renovating the kitchen,
refurbishing of the beautiful wood
floors, painting, and purchasing of
adaptive equipment. Despite Mary
Elizabeth’s passion for the project,
yet inability to assist meaningfully
with many renovating tasks, her alum
group is still allowing her to move
from president-elect to president in
2008! Don’t ask her to use a sander
or remove cabinetry…but she can
inspire others with the stories of
the children to move mountains! Many
family, friends, Austin school
groups, the Bikers for Christ, and
Sears jumped on board before she was
done. Her Chi Omega Sisters were a
remarkable source of assistance and
support!
Finally, one of the
greatest honors has been Mary
Elizabeth’s appointment to the
Federation of State Boards of
Physical Therapy Examiners where she
serves as an item bank reviewer for
the physical therapist assistant
exam. She has also been invited for
additional service to this
organization. She enjoys the time in
the Washington D.C. area where she
has many friends…and loves the fact
her family can join her on these
extended business trips. |
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Information Sheets
Helps get information
out about SWAN USA, print off our
Flyer or
Brochure
and give it to parent groups, doctors offices,
therapy centers and any other place appropriate. |
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Contact Us
Phone:
269-692-2090
Family
Line: 888-880-SWAN
swanusa@undiagnosed-usa.org |
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