Strollathon To Benefit  Rett Syndrome Research

STAMFORD — Six years ago Trumbull resident Monica Coenraads co-founded the Rett Syndrome Research Foundation after her daughter, Chelsea, was diagnosed with the disorder.

Unfortunately, the plight of this mother and daughter is not uncommon. Rett syndrome, a debilitating neurological disorder, is the leading genetic cause of severe impairment in females. Rett syndrome is the only autism-spectrum disorder with a known genetic cause.

As a firm believer in science, Ms Coenraads organizes events to raise funds for research. The third annual Tri-State Strollathon will take place Sunday, May 22, at Cove Island Park. The strollathon is a fun-filled family event with entertainment, snacks, and plenty of activities for kids. As the world’s leading private contributor to Rett syndrome research, RSRF has developed the strollathon program as its signature fundraising event.

Last May, this tri-state event raised almost $200,000 with 97 percent of the donations going directly to RSRF’s research program. Eight are held nationwide.

A devastating neurological disorder that strikes at random, Rett syndrome deprives little girls of speech, normal movement and hand use, bends their spines, and weakens their bones. It brings seizures, breathing and swallowing difficulties, blood pressure and heart rate instability. Rett syndrome leaves its victims profoundly disabled and in need of complete assistance for every basic need. Many Rett syndrome children live a normal life span.

Ms Coenraads’ daughter suffers all of these symptoms.

“In October of 1998, on our daughter’s second birthday, we heard the words no parent ever wants to hear: ‘Your child has Rett syndrome. She will never speak, walk, or use her hands. There is no cure and there is no hope.’ With those words our world changed forever,” Ms Coenraads said.

Chelsea, at age 8, requires extensive care. She is in a wheelchair and cannot speak. She no longer has any meaningful use of her hands. She is fed through a feeding tube and is currently homebound from elementary school due to severe seizures.

“Although the neurologist was correct about the severity of Rett,” Ms Coenraads said, “she could not have been more wrong when she stated there is no hope.”

In 1999 a research team identified the cause of Rett syndrome as a defect in the MECP2 gene on the X chromosome. Due to the nature of the disorder, everyone is at an equal risk for having a child with Rett.

Identifying the gene that causes this syndrome was an important discovery not only for Rett syndrome, but also for a wide range of disorders, including autism, schizophrenia, Alzheimer’s, Parkinson’s, learning disabilities, and neonatal encephalopathy.

With RSRF-funding, scientists recently achieved yet another tremendous breakthrough. They were able to prevent Rett-like symptoms in an animal model of the disorder. With continued financial support from RSRF, scientists in multiple labs are now attempting to reverse those symptoms.

“Treatments and a cure are within our grasp if we continue to fund the highest quality research,” she said. “The strollathon program will help us meet this increased demand for research dollars. With the public’s much needed help, Rett Syndrome will be eradicated.”

For more information regarding the strollathon and Rett syndrome visit www.rsrf.org.