TheRaceForGrace.com

The STORY
Grace is five-years old and has been stricken by a devastating disease called Rett Syndrome (RTT). Once full of sparkle and boundless ability and energy, Grace is now struggling to cope with a failing body and mind. Picking up Cheerios has become a daunting and fading task for her. Grace began life as a perfectly normal and healthy baby girl. At 18 months old, we knew that something had started to go terribly wrong and all hopes of a normal and healthy life were stripped away from her when the diagnosis was confirmed in November of 2006. Grace has two brothers, Sam (11) and Ben (9) and two sisters Meg (7) and Lily (3), who desperately want to play and run with their sister but they have had to learn to accept that those days are over for Grace.

WHAT IS RETT SYNDROME?
Rett Syndrome is a devastating neurological disorder seen almost exclusively in females. It is the leading genetic cause of severe impairments in girls. Little girls with the disorder are born without any signs of the syndrome. By the age of 2 years, loss of language and motor skills are prominent. Breathing, digestion, heart rate and sleep patterns are dysfunctional. Scoliosis begins. Teeth grinding occurs. Seizures develop. Rett Syndrome leaves its victims profoundly disabled, requiring assistance with every aspect of daily living. These beautiful little girls, from the outside, look like perfect angels. However, Rett Syndrome takes over and robs them of a healthy life.
“Rett syndrome is a devastating disease. Think about what it takes to function normally: You have to be coordinated, you must be able to think, you have to be able to communicate, and you need to move smoothly and with balance. The symptoms of other neurological diseases affect some of these functions but Rett syndrome affects them all.
It’s very hard not to be intrigued by this disease. We all are familiar with neurological diseases; I’m sure everyone has seen some one with epilepsy, or Parkinson’s disease, or bipolar disorder or schizophrenia. But when you see symptoms of all these diseases in one individual, you are struck by this. Rett syndrome is particularly heartbreaking because it develops after the child has already learned to walk, and perhaps even say a few words. To lose all that and gradually develop a symptom from almost every neurological disease in the book is quite mind boggling.”
Dr. Huda Y. Zoghbi
Professor in the departments of Pediatrics, Molecular and Human Genetics, Neurology and Neuroscience at Baylor College of Medicine.
Investigator at the Howard Hughes Medical Institute.
Source: http://www.hhmi.org/news/zoghbi20080530.html

BREAKING NEWS ANNOUNCED ON FEBRUARY 8, 2007
This past year proved to be an exciting year for anyone who knows or loves a girl affected by the devastating neurological disorder, Rett Syndrome. Remarkable research, funded by the Internatonal Rett Syndrome Foundation (IRSF), not only took place, but reached outstanding conclusions!
Scientists have been able to reverse Rett-like symptoms in adult mice who were so sick they were days away from dying. Breathing, weight, mobility, and gait normalized and tremors disappeared. The conclusions of the experiment are crystal clear: there is no permanent brain damage in mice afflicted with Rett Syndrome. This signifies it is worthwhile for scientists to continue their diligent efforts in finding a cure for Rett Syndrome. This breakthrough gives the green light to go ahead full throttle in their search. As Dr. Adrian Bird, scientist who performed reversal experiment, says, “It has given wind in the sails to scientists all over the world.”

We desperately need your help. With your support, we may be able to eradicate this devastating disease. The implications for treatments and a cure carry over to related diseases/disorders such as Parkinson’s and Autism, an accomplishment that seemed far out of reach until this year.

Visit : http://www.rettsyndrome.org for more information on Rett Syndrome