A marathon of research, echoing the demands of this epic journey, is our best hope for our children's future . This race is sanctioned by the United States Canoe Association and American Canoe Association. Rett Syndrome Rett syndrome is a rare and devastating disease randomly affecting approximately 1 in 10,000 live births. The majority of persons born with Rett syndrome appear to develop normally for the first 6 to 18 months, then regress or stagnate in all areas of development. Most males affected by this mutation do not survive birth, hence, those living with Rett syndrome are primarily female .
Genetic testing is available.
There is no cure. Treatment options are limited. Those with Rett syndrome face a lifetime of illness and full time care for even the simplest basic need. The Great Mississippi River Race For Rett Syndrome, 2001.