Dear Friend,As we all know the 20th century witnessed remarkable advances in science and medicine. Nevertheless, there is still much to be done in the 21st.
I learned this myself when a little girl named Abigail came into my life. I wish I could say she walked into my life, but Abigail can't walk. She can't talk or use her hands. She depends on others for every aspect of daily life. Abigail has Rett syndrome.
You may not have heard of Rett syndrome - a disorder that strikes most often in girls - but it has affected countless lives. There may be 200,000 girls and women worldwide who have Rett syndrome. Because it was not recognized in the American medical community until the 1980s, however, many girls were misdiagnosed with autism or cerebral palsy. Others simply went undiagnosed for decades.
Rett syndrome becomes apparent after 6-18 months of early normal development. The baby with Rett syndrome smiles, rolls over, sits up, babbles and waves bye-bye just like her brothers and sisters. She may begin walking and talking. Then, a heartbreaking regression occurs, resulting in loss of speech, hand-use and mobility. Girls with Rett syndrome and their families, face a lifetime of severe handicaps.
Abigail claimed my heart with one smile. I knew I wanted to help the International Rett Syndrome Association (known as IRSA) provide care, advocacy and research that will make a difference. Together with the Discovery Health Channel we filmed a documentary entitled Silent Angels: The Rett Syndrome Story, which began airing in August and continues to be broadcast. I hope you will watch this special story of courageous families and determined researchers as they strive to find answers to this mysterious and debilitating disorder. Their combined efforts were rewarded when, midway through the filming of the documentary, the gene that causes Rett syndrome was discovered.
The discovery of the Rett syndrome gene was a major scientific breakthrough, achieved after years of research (much of it funded by IRSA). Now that the gene has been found. new efforts are underway to develop treatments, and ultimately a cure, for Rett syndrome. The discovery may also yield other benefits. The gene responsible for Rett syndrome controls the functioning of other genes, and is the first such "housekeeping" gene linked to a human disorder. Scientists now believe that the discovery of the Rett syndrome gene may lead to genetic breakthroughs in other areas of study, such as autism. Needless to say, all this scientific research - and the family support services provided by IRSA - are quite costly.
Please join me in supporting this important cause. Your contributions will help further research into genetic disorders, and hopefully unlock the puzzle of Rett syndrome and bring about its prevention, treatment and cure.
We can't turn back the clock - but we can touch the future. My friend Abigail and I look forward to the day when our efforts make Rett syndrome unknown, not because it is unrecognized, but because it has been conquered.
I urge you to please give generously.
Sincerely,
Julia Roberts
P.S. For more information about Rett syndrome, please visit the International Rett Syndrome Association website at www.rettsyndrome.org.
