Clark Eid, left, and his kayaking partner, Kurt Zimmermann, paddle the Double Helix on the Connecticut River in training for The Great Mississippi River Race for Rett Syndrome next May.

Photo by Michael Beach.

At 6 a.m. May 5, 2001, a flotilla of kayaks and canoes will push off into Lake Itasca to begin a 2,348-mile race to the mouth of the Mississippi River.

The race is a serious challenge by Clark Eid and his paddling partner, Kurt Zimmermann, to break the record for the distance from the headwaters to the last mile marker near New Orleans.

The Great Mississippi Race for Rett Syndrome also is a call for public and medical community awareness of Rett Syndrome and funds for research into the genetic mutation that has disable Eid's daughter, Amanda, and thousands of other girls.

"This is the longest race that's ever been held," said Eid, formerly of Fertile, now a chemist for Bristol-Myers Squibb living in Cheshire, Connecticut. "It's symbolic also because the research is going to take an awful lot of work. It's kind of a call to arms."

Eid said he has about 15 teams committed to the race, which will start in Lake Itasca near Douglas Lodge, three miles above the headwaters. The race will end at midnight May 31, 2001, or when the last boat reaches the mouth of the Mississippi. Eid said he and his partner, now practicing in the Connecticut River, plan to break the 1989 record of 23 days, 9 hours, and 51 minutes for the river trip. This time put the names of Bill Perdzock and Mike Schnitska in the Guinness Book of World Records.

Clark Eid and his wife, Mary Potter, enjoy an outing to the headwaters of the Mississippi in 1999 with their children Noah, left, and Amanda. Photo by Tony Swenson.

Amanda was born with Rett Syndrome, a debilitating neurological mutation that causes many disabilities.

Her father is challenging canoeists and kayakers to a race down the Mississippi River in the spring to raise awareness of the condition and money for research.

Mississippi River Race site: http://www.dreamkeeper.org
Rett syndrome site: http://www.rettsyndrome.net

"I think we'll break 20 days," Eid said. "There are some days we'll be pushing 250 miles. We figure by nightfall (May 5, 2001) we'll hit Bemidji and actually cross Lake Winnibigoshish within 48 hours of the start."

To complete the trip, Eid estimated he and Zimmermann will paddle one million to two million strokes. The pair will paddle almost constantly, taking turns sleeping in their tandem kayak.

Each team of paddlers must be accompanied by a support team, and Eid and Zimmermann have 18 people, including 10 research scientists backing them up.

Eid said the idea for the fundraiser race came out of a 1999 family trip to the headwaters of the Mississippi with his wife, Mary Potter, a computer science graduate of the University of Minnesota, daughter Amanda, 8, and son, Noah, 4. For some reason, children with Rett Syndrome are fascinated by water, he said.

"I carried her across the headwaters and she wanted to walk across," Eid said. "She can walk a little--all her joy and the giggling was wonderful to see."

He said he wanted the fundraiser to be something unusual to get people's attention and challenge people to join the race. A bowl-a-thon or marathon run was just not dramatic enough.

When he returned home from the Minnesota vacation, Eid began building his 25-foot, two-man kayak, named the Double Helix in honor of the genetic code. He built the boat from more than 2,000 pieces of wood, including 30 feet of intertwining rose vines applied as a veneer. The vines motif also is a message spelling out in the DNA peptide code the words AMANDASDREAMKEEPER. "It makes it a calling card to researchers," said Amanda's mother.

Eid said he plans to auction off the Double Helix after the race.

He also plans to set up canoes in malls and other high-traffic areas and see if people can fill them with pennies. He said the average canoe can hold one million pennies, or $10,000.

Rett Syndrome affects about one in 10,000 to 15,000 girls, with symptoms showing within the first two years of life. The girls seem normal for the first 6 to 18 months then lose purposeful hand movements, language, and coordination. They develop tremors and uncontrolled persistent hand motions, such as clapping, washing, or wringing movements.

Potter said the severe neurological disorder is progressive, but with correct medication to control things like hyperventilation, girls with Rett Syndrome live to grow up.

"My memory goes back to a time of about a week around my birthday in December when Amanda was about a year and a half, when she could say, "I love you." It was only a week," Eid said. When Rett Syndrome set in, Amanda was old enough to know something was wrong, Eid said. She knew she was losing control of her body and became autistic.

Eid, a 1979 Fertile-Beltrami High School and University of Minnesota graduate and a research chemist with a pharmaceutical company, said he decided to appeal directly to the scientific community with his fundraising Mississippi race.

"One thing I know is research," Eid said. "If you want to get things done you can raise all the money in the world, but unless you have scientists who are willing and eager to work on it, you might as well sit on it."