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The
Eid family, at the headwaters of the Mississippi
River. L to R: Clark, Noah, Mary (standing) and
Amanda. Amanda Eid has Rett syndrome.
Photo by Tony Swenson (team Double Helix)
Bow
of the Double Helix,
the flagship race craft for the Great Mississippi
River Race for Rett Syndrome, May 2001. The Double
Helix was built by Clark Eid and is encircled
by a floral representation of a DNA code that spells
"Amanda's Dreamkeeper". The craft was
signed by Dr. Watson and Dr. Crick, and contains
wood and boat fragments from the Amistad, Alcyone
and Calypso. The Double Helix is being
placed at the New Orleans convention center for
public view to increase awareness of this even and
Rett Syndrome.
Clark and Amanda Eid. Amanda is 2 in this picture,
could walk unassisted, say a few words, and went
out to play every day. Today, Amanda is almost 13,
has uncontrolled seizures, is homebound, and primarily
bed ridden.
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Main
Contacts
Clark
Eid (Race Chairman and Founder) and
Mary Potter (Webmaster and Event Co-organizer)
Clark
Eid and Mary Potter are married to each other, and
have 2 children, Amanda and Noah. Amanda has Rett
Syndrome.
Contact
us by email
or call us at (845) 634 6406.
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Founder's
Message
The Great Mississippi River Race for Rett
Syndrome, May 2001
Dear
Friends:
It
wasn't long ago that our lives seemed somewhat
normal, even for a family with a child suffering
from Rett syndrome. That was a time when
there was more of a distinction between
what was "impossible" and what was merely
"difficult".
Now,
our lives and views have been forever changed
for the better, because of you. The Great
Mississippi River Race for Rett Syndrome,
May 2001, would have been impossible
without your kind help. This
event has drawn out the best in everyone
and we are truly thankful. You are the "Dream
Keepers" for our children's future.
We
also want to thank all those who made the
difficult choice to become involved with
the often bittersweet world of Rett syndrome.
You've demonstrated remarkable courage in
becoming part of our lives. It's impossible
to over-estimate the positive effects of
your actions.
Last,
but not least, we call upon the research
community to take notice and pride in this
event. We recognize that your research holds
the keys to unlock our children's bonds.
We need your help, and we'll go the extra
2,348 miles to help you do what was once
thought impossible ...... to find a cure!
With
Kindest Regards,
Clark Eid and Mary Potter
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Information
on Rett Syndrome
For
more information on Rett
Syndrome research, please
see the Rett
Syndrome Research Foundation
or your favorite Rett
Syndrome website/charity.
To
meet Rett families and
parents online who help
other Rett families, please
join a listserv of your
choice, or our one of
our favorites - the Rett
list or Clubrett
(both lists are free -
no membership fees, and
both run by Rett parents/family
members).
For
FREE BOOKLETS
on Rett
Syndrome
that contain
great
information,
pictures
and are
free to
download
please
see
Rett
Syndrome
UK
and the....
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