2003 World Record Set:
18 days, 4 hours, 51 minutes!

The Mississippi River Challenge for
Rett Syndrome & Leukodystrophy

- May 10, 2003 6 AM to May 28, 10:51 AM 2003-
A 2,348 Mile Marathon to Support a Marathon of Research!

Please see Justin Bradford's Website and sign his guestbook - he loves to hear from everyone (Justin is Bob Bradford's grandson)!


L to R: Bradford & Eid, near Lock & Dam 24

 

 

Clark Eid, Noah Eid, standing Mary Potter, sitting Amanda Eid at the headwaters of the Mississippi River. Amanda has rett syndrome.

Hanson Family, Left to Right Tammy Hanson, Rachel Hanson. The Hansons live in Minnesota


Lisa and Jill Evert join Team Hope during the race.... Jill has Rett Syndrome.

Tabitha Forsythe, age 16, Tabitha is Karen Miller's daughter, the live in the New Orleans, Louisian area


Katie Hallstrom, Age 11. Katie is Kandy Hallstrom's daughter, they live in Idaho

Rett Syndrome

What Is Rett Syndrome?

Americans may recognize Rett syndrome as the disorder that Julia Roberts has publicized. Julia Roberts spoke about Rett syndrome before Congress in 2002, covered by a well televised CNN news report or from a Rett syndrome documentary she appears in called "Silent Angels".

Rett Syndrome is a debilitating neurological disorder historically believed to affect 1 in 10,000 females within the first two years of life. Girls with Rett Syndrome appear to develop normally until 6 to 18 months of age. They then enter a period of regression, losing speech, hand skills and motor skills they had acquired. Most girls go on to develop seizures, repetitive hand movements, irregular breathing problems and a host of muscle problems.

The girls can live to adulthood, but most never regain the ability to use their hands or ability to speak. Muscle problems progress (sometimes rapidly) as these girls age, and can include muscle wasting, severe scoliosis, loss of ability to swallow, severe digestive problems, and motor apraxia (knowing how you want to move physically, but being unable to do so).

Who Can Get Rett Syndrome?

An unusual X-linked genetic mutation (MECP2) was recently discovered that accounts for most Rett syndrome cases. Over 99% of those affected by Rett syndrome have no case history in their family with Rett syndrome. Rett syndrome testing is now available.

Treatment & Prognosis

There is no cure. Therapies to improve the quality of life remain elusive. The continued outcome of this disorder is a life time of full time care even for the most basic needs. Specialized equipment, surgeries and full time care from a parent or sibling become a standard part of life for these children and adults. Caretakers as well as those with Rett syndrome face a life time of dependency issues, employment issues and care.

Hope for A Brighter Future

For those living with Rett Syndrome, our best hope for a future free from disabilities is through research. A great challenge lies ahead of us to understand incredibly complex disorder and develop an effective therapy to combat it. For more information on the latest news in Rett syndrome, please see the International Rett Sydrome Foundation.