Race against a river to fight Rett syndrome
By Liz Acas
©2001 Republican-American

Clark Eid knows how to get attention.

When two passers-by stopped to check out his kayak in Rocky Hill, he casually mentioned the race hes organizing to raise money for Rett syndrome, a neurological disorder that affects his daughter, Amanda.

"Its going to be nonstop, the way races were meant to be," he said. "Not any of this sissy stuff like the Tour de France or the Iditarod," referring to the famous cycling event and the annual sled dog race in Alaska.

The Great Mississippi River Race for Rett Syndrome at 2,348 miles long is believed to be the longest ever attempted in North America. Its goal is to raise $1 million for research to find a cure for the disease, but Eid said the interest it stirs up is just as important.

"If you can get an excited researcher out there talking to his friends, thats priceless," said Eid, 40, a research scientist who lives in Cheshire.

If the sheer length of the race doesnt capture the publics imagination, the world record at stake might. Eid and his teammate, Kurt Zimmermann, 34, are hoping to beat the time of 23 days, 9 hours and 51 minutes.
Six teams, each pledging at least $2,500, have signed up. The event starts May 5 at Lake Itasca, Minn., the headwaters of the Mississippi, and ends at the Gulf of Mexico.

The idea for the race came out of a family vacation to the Lake Itasca in 1999. Eid told his idea to his wife, Mary Potter.
"I think I agreed to this thing fairly quickly from there," she said.
Amanda was healthy until she was about a year old. Although she could talk and play, she still hadnt learned how to walk. She also showed some aggressive behaviors, such as pinching and biting. Doctors initially thought she was autistic.

Later, Amanda developed breathing problems, seizures and sensitivity to heat and noise. Eid and Potter suspected Rett syndrome early on, but it wasnt until she was nearly 8 years old that doctors finally confirmed it.
Most children with Rett syndrome develop normally for the first six to 18 months of life, then regress, often losing their ability to speak, use their hands or walk.

The disease occurs randomly once in every 10,000 live births.
Nearly all the 3,000 known cases 35 of them in Connecticut are in women and girls. Boys who have the disease usually do not survive birth.

"Its a complicated disorder and its going to take researchers working from many different fields to find treatments," said Monica Coenraads, vice president of research for the Rett syndrome Research Foundation.
Within the past two years, scientists have made two breakthroughs. One researcher identified the spontaneous genetic mutation that causes the disease in 1999. Since then, another figured out how to develop the disease in mice, a discovery that enables researchers to test treatments.

The research theme shows up in Eids kayak, the Double Helix.
Winding around the hull is an elaborate rose pattern that mirrors a segment of DNA that spells "Amandas dreamkeeper." The hull features a plaque signed by Watson and Crick, the team of scientists who discovered the double-helix model of DNA. Eid crafted the boat from more than 2,000 pieces of wood, including scraps from the Amistad and the Calypso, the Cousteau Societys research vessel. Eid sees it as a symbol of liberation and discovery.

The boat is designed so that one person can sleep while the other one paddles.

For more information contact (203) 271 2484. Web site http://www.dreamkeeper.org