The Great Mississippi River Race for Rett Syndrome, May 2001
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Ship
of Dreams |
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The
Eid family at the Mississippi Headwaters. Amanda Eid (in wheelchair)
has Rett Syndrome. Photo by Tony Swenson
Clark Eid (left) and Kurt Zimmerman (right), Team Double Helix paddlers, at practice on North Farms Resevoir, CT. Photo 12/00
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Visiting
the Mississippi River Headwaters in the summer of 1999 began like a
typical family vacation. We met friends, enjoyed a picnic, and made
our way to the birthplace of the Great River. Unbeknownst to us, a subtle
transformation had begun to change this simple pilgrimage into an epic
journey to help those suffering from Rett syndrome, a rare and devastating
neuro-degenerative disease randomly afflicting thousands of little girls
and young women. No one could have imagined that this was the beginning
of The Great Mississippi River Race for Rett Syndrome, May 2001. Unsuspectingly, I happened to be standing in the same current and soon found my hopes and dreams for Amanda's future mixing with thoughts of the river. It became clear that Amanda's best hope for the future would flow from Rett syndrome research. The pathway followed by research is like the course of the river ... difficult, full of obstacles, and challenges. It stood to reason that even the researchers were like past voyagers, plying the waters of discovery. So strong was the current that it fused these abstract notions into a distinct thought: If water can shape the world and give us life, then it could shape a little girl's future and improve the quality of her life. More ideas began to surface on how the river could help researchers in their struggle. A symbolic river race could be held, but not a typical race. The race had to be an unprecedented marathon representing the extraordinary effort needed to develop a cure for Rett syndrome. It would have to be extreme, at the edge, in order to make sure our message was heard and not easily forgotten. The general outline for The Great Mississippi River Race for Rett Syndrome, May 2001 was clear, but how could it be accomplished? We began by forming our own team that would commit to the race. Fortunately, my colleague Kurt Zimmermann shared our vision and agreed to be my racing partner. This was extraordinary since we were both research scientists, a fact that would not go unnoticed by the scientific community. We next needed a means to herald the event. My wife, Mary, accomplished this by using her background in computer science to develop a web-site at www.dreamkeeper.org. This gave us the ability to manage the many details of the event and to reach out across the world from our Connecticut home. Nevertheless, more had to be done for others to take notice. We decided that if we were truly going to lead by example, we had to build our own racing craft that would also serve as the event's flagship. It had to be as extreme as the event itself. A flagship like no other was needed to represent the goals of this epic event. She had to be the embodiment of determination, a gem with facets reflecting sincerity ... crafted from dreams. Her name would signify profound scientific advancement related to the disease she would help to conquer, hence she would be christened the Double Helix. The vague images of the Double Helix became clearer when a set of blue prints arrived at my home on Thanksgiving Day from Nick Schade of Guillemot Kayaks. Nick used advanced computer programs to compose this masterpiece, a duet of form and function. The technical aspects for this ultra-marathon kayak were demanding. Some of the factors considered in her design were the necessity for one paddler to sleep while on the water, speed, displacement, wetted surface area, wave patterns, and the physical dimensions of each paddler. The task of sculpting the 25' Double Helix remained to be done. The mold over which the craft would be constructed was completed on New Year's Day. The first of many thin wood strips was fastened and the Double Helix began to take physical form. Two intense months later, the hull and deck of the Double Helix were covered with wood. The surface was then prepared in anticipation of the next phase of construction, the marquetry that would depict thirty feet of rose vines wrapping around the slender craft. Two more months
of caffeine-enhanced nights passed as more than 2,000 delicate pieces
of 63 different wood veneers were cut, sanded, and affixed to the craft's
surface. For most people, the result was simply a beautiful arrangement
of flowers. However, the vines represented far more than what meets
the eye. The vines themselves mirror a segment of double-stranded DNA
that codes for a peptide that spells: The next three months were focused on covering the interior of the craft in high-tech carbon fiber and the exterior in transparent fiberglass. No time was wasted in adding deck hatches, bulkheads, titanium interior supports, special seats, foot braces, pumps and a rudder to make her seaworthy. Additional wooden deck fittings were carved which brought the total number of different woods used in the Double Helix to nearly one hundred. Further symbolism was woven into the Double Helix by utilizing materials from famous ships. The exotic woods used in the ornate compass ring, rudder catch and hatches were left over from the reconstruction of the Amistad, another ship standing for liberation. The kindness of The Cousteau Society has allowed the Double Helix to sail with two ships associated with great scientific discovery: the Calypso and Alcyone. A navigation console was constructed with woods from the Calypso, echoing her brave spirit to venture into the unknown. A white rose inlay on the console reflects the TurboSails of the technologically advanced Alcyone. The
Double Helix is seldom at rest. She reverberates with the energy
and enthusiasm imparted by the many kind souls who came forward to donate
their time and materials. She represents the high standards we have
set for this charity event from its beginning to its end ... and beyond.
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