Friday, May 20, 2011

Salk researcher gets $5.5 million grant to study Williams syndrome

The Salk Institute for Biological Studies was awarded a $5.5 million research grant today to study Williams syndrome as a way to learn more about neurological development in children.

The award from the National Institute of Child Health and Human Development could help researchers untangle the connection between genes and social behavior.

“How the brain processes social information and integrates it with other forms of perception and learning is one of the major frontiers in neuroscience,” said Ursula Bellugi, director of the Laboratory for Cognitive Neuroscience at the institute.

“Using Williams syndrome as the basis for a new approach to social neuroscience is exciting and promising, in part because its genetic basis is clearly understood, and it is associated with a very specific pattern of cognitive strengths and weaknesses and some puzzling paradoxes,” the professor said.

The condition is the result of a faulty recombination of cells during the development of sperm or egg cells, leaving nearly all sufferers lacking certain genes.

Victims are gregarious and attracted to strangers, but have difficulty understanding inanimate objects. They are beset with health problems and have a low IQ.

Bellugi said victims of the syndrome who are asked to draw a bicycle will instead draw its parts randomly across a piece of paper.

“Understanding the mechanisms and pathways underlying the organization of human social behavior is important in a wide variety of mental disorders,” Bellugi said. “By dissecting Williams syndrome, we hope to gain new insight into other neurodevelopmental disorders such as autism.”

Wednesday, May 11, 2011

Battling Williams syndrome - FOX23 News

Battling Williams syndrome - FOX23 News :

"Vanderbilt University is studying how music - and more - affects anxiety at this special camp for people with Williams syndrome.

'It's kind of a lesson in contradictions. How can people who have significant developmental disabilities also have pronounced and marked interest in music and musical talent,' Dr. Elisabeth Dykens asked?

The answer could lead to new treatments for all people with anxiety. Research Seth is proud to be a part of."

There is a very good and short video on the link or you can go directly to it here:

President Nominates Former NAB Exec To Intellectual Disabilities Committee

President Nominates Former NAB Exec To Intellectual Disabilities Committee - 2011-05-10 21:38:04 | Broadcasting & Cable:

"President Obama has nominated former National Association of Broadcasters government affairs executive Carol Wheeler to be a member of the President's Committee for People with Intellectual Disabilities.

Wheeler, who most recently was coordinator for the Washington Chapter of Project Children, was formerly VP for government affairs with NAB as well as a consultant to America's Public Television Stations, which advocates for noncom stations in Washington.

Wheeler is the mother of a child with Williams Syndrome, a genetic disorder that can lead to cardiovascular problems and developmental and learning difficulties in children who are often also highly verbal, social and musically gifted.

'These fine public servants both bring both a depth of experience and tremendous dedication to their new roles,' said the president in announcing a series of appointments to the committee. 'Our nation will be well-served by these men and women, and I look forward to working with them in the months and years to come.'

'The mission of committee is 'to provide advice and assistance to the President of the United States and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual disabilities and the field of Intellectual Disabilities.''

iPads help kids with disabilities to learn

MILFORD, Pa. — Gabe wasn't speaking until he started using an iPad, says Ann Gillerlane, director of the Center for Developmental Disabilities.

Three-year-old Gabe (the center asked not to use his last name) has been diagnosed with Williams syndrome, a rare neurodevelopmental disorder caused by an abnormality in chromosomes, according to the Williams Syndrome Foundation. This slows Gabe's development.

Before the iPad, Gabe wasn't talking. He couldn't communicate. He and his parents, were frustrated. But when one of the staff at the center started working with Gabe on her iPad, his interest was sparked.

Then one day at the center, Gabe said "Hee Haw," and pointed to a picture of a donkey on the iPad. Since then his language skills have been improving.

Gillerlane was amazed. "I'm not the type of person to go out and buy the latest technology," Gillerlane said. "But when I saw how Gabe was responding, I knew we had to have iPads."

Apple introduced the iPad in March 2010; an unforeseen benefit has been the way people with disabilities have used the table computer to overcome communication difficulties and learn new skills.

Monday, May 9, 2011

Davison event raises awareness of rare genetic disorder

Davison event raises awareness of rare genetic disorder :

DAVISON, Michigan — When kids and adults walked the track at Collins Stadium on Saturday they will be trying to raise awareness about a rare genetic disorder that affects at least two local families.

New Jersey is running for awareness

Heather O'Connell's daughter, Delaney, was a year old when she was diagnosed with Williams syndrome, a genetic condition often characterized by cardiovascular disease, learning disabilities and developmental delays.

"She first walked when she was 21 or 22 months old," O'Connell said of Delaney. Earlier this month, as a member of the YMCA's Special Kids Organized Recreation team, the girl who didn't walk until she was nearly 2 years old won the gold and two silver medals at the trials for the Special Olympics Summer Games.

Delaney, now 8, will also join her mother for the NJ Walks for Williams and 5K Run at 9:15 a.m. Saturday at Veterans Park, Kuser Road entrance, Hamilton. A one-mile awareness walk and fun run will begin at 10 a.m., with a USATF-NJ Grand Prix Event at 10:30 a.m.

O'Connell, a 39-year-old Pennington resident who serves as the regional chairwoman of the Williams Syndrome Association, organized the walk last year and raised $5,000 with the help of about 200 participants, including kids.

This year, her message is that awareness and funding for Williams syndrome help support not only those living with the condition, but also their families and educators in the community.

"Awareness in the community is so important because there are so few people living with Williams," she said. Nationally, 30,000 people have it.

"Others should understand why our kids are so social and so loving that they may go up to a stranger and give a stranger a hug," O'Connell said.

Delaney learns social skills from her parents and her teachers, but she can't control her impulse to approach strangers for friendly conversation.

"I am trying to let her know that not every stranger wants to have a conversation with a cute little girl," she said.

Williams kids are inquisitive and sweet, yet sometimes they feel a level of anxiety about situations that "puts their brain in overdrive," she said. "They are just so intrigued and interested with other people, who they are and what they are about. It's not a bad quality, she just needs to know how to use it properly," O'Connell said.

Friday, May 6, 2011

Berkshire Hills Music Academy in South Hadley uses music to teach everyday skills to learning-disabled students

SOUTH HADLEY – Behind a cluster of tall trees on Route 116 is a sunlit mansion that houses a lively and intriguing educational facility.

“Berkshire Hills is filled with music and positive attitude from one end of the day to the other,” said Gary Shaw, the new director of Berkshire Hills Music Academy in South Hadley.

The unusual post-secondary school celebrates its 10th anniversary this year.

It serves students with learning disabilities caused by Asperger’s, Down and Williams syndromes, brain injury, cerebral palsy and other conditions

They don’t have to be musically gifted to enroll, but music is used to help them master the everyday demands of living.

“The skills they use for music transfer over to independent-living skills,” said Kristen B. Tillona, director of admissions at the school.

Students get two private music lessons a week. They are also taught fiocus, confidence, socieal engagement -- and such practical things as how to do laundry.

Tuesday, May 3, 2011

Photo Gallery of Williams Syndrome Folks Meeting