COOPERSTOWN, 05/09/11 – State Senator James L. Seward (R/C/I-Oneonta) today announced that the state senate recently approved a special legislative resolution he sponsored calling on the governor to proclaim May 8 – 14 as Williams Syndrome Awareness Week in the State of New York.
“Williams syndrome is a relatively unknown genetic disorder, yet it affects 1 in 10,000 people worldwide,” said Senator Seward. “Generating public awareness about Williams syndrome is an important step in supporting patients who suffer from the disorder, along with their families, improving care and advancing future research.”
Stephanie Quinonez of Edmeston, whose 6 year old daughter Sela was recently diagnosed with Williams syndrome, alerted Senator Seward to the disorder. “I applaud Senator Seward’s compassion for my daughter Sela and all Williams syndrome patients. The statewide awareness week is an important measure that will help educate people about Williams syndrome and those afflicted by the disorder.”
Dr. Monica Brane, a pediatrician at Bassett Healthcare Network, Oneonta, explains that, "Williams syndrome is a rare genetic condition caused by a deletion in chromosome 7. It is associated with developmental delays, learning disabilities, cardiovascular disease, as well as a highly social personality. While parents may not have any family history of the condition, a person with Williams syndrome has a 50 percent chance of passing the disorder on to each of his or her children. However, there is still more we can learn about Williams syndrome. Raising awareness and continued research are extremely important to these families."
Sela Quinonez and her family will be taking part in a fundraising walk for Williams syndrome in New Hartford, Saturday, May 14. Walk organizer Bridget Jones said, “The senate proclamation recognizing Williams syndrome is vital to bringing additional attention to the children and adults living with the disorder. I appreciate Senator Seward’s advocacy.”
According to the Williams Syndrome Association (WSA), Williams syndrome is a genetic disorder, present at birth, which affects 1 in 10,000 people worldwide. Williams syndrome is characterized by a typical facial appearance and medical and developmental problems such as cardiovascular disease and learning disabilities. In tandem with these characteristics, individuals with Williams syndrome often exhibit striking abilities such as advanced verbal skills, highly sociable personalities and an affinity for music. Currently, there is no cure for Williams syndrome and no known way to prevent the genetic problem that causes it.
Additional information on Williams syndrome and the upcoming fundraising walk in New Hartford can be found on-line at www.williams-syndrome.org.
Photo caption: Senator Seward presents the Quinonez family with a senate resolution proclaiming May 8-14 as Williams Syndrome Awareness Week in the State of New York. From left, Senator Seward, Stephanie Quinonez, Sela Quinonez, Willie Quinonez, Odessa Quinonez.